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Hi all,

My husband Dave and I went to an In Vitro appt at Penn yesterday. We have

come to the conclusion that it would not be in my or the baby's best interest

for me to carry a baby b/c of my presentation of mitochondrial disease.

So, our options are 1. for us to use our DNA to create an embryo to be

implanted in a gestational carrier (someone else who would carry the baby for

us....either a friend or a stranger) 2. Using donated eggs and Dave's sperm or

3. adopting. The first two options would require in vitro in order to place

the embryo in the other woman.

I have no family history of mito and there is no guarantee that it is

maternally inherited in me, although it is looking more suspicious based on the

results of the last skin biopsy. Yet, our first choice would be to use DNA from

both me and my husband. I know of families with a child with mito and a

healthy child so there is no 100% guarantee our child would have mito even if

we

used my genes. There aren't any absolutes in life and even if we use another

woman's egg, our child may end up with some other disease. And even if our

child does have mito, he/she may not get symptoms of it till later in

life...who

knows! The physician we saw at Penn said that I was the 5th woman with mito

who he has seen in the last year which surprised me. All other women were

coming for egg donation so that they didn't have to use their own eggs. As far

as cost, it is $15,000 for the in vitro if we use our DNA and $25,000 if we

use an egg donor. This is without the cost of legal fees or care for the

gestational carrier. It's a big deterrent that the donated eggs cost an extra

$10,000 but if it is determined that we absolutely have to go that way then I

guess we'll have to deal with it when it comes.

The one big concern the doctor had was about me using the ovulation

stimulating meds if we are going to use my eggs. He said that some women can

develop

ovarian hyperstimulation syndrome which can be pretty serious if not caught

early. I would have to use the meds for 5 weeks before egg retrieval. Have

any of you used any of these meds to have a child b/c of infertility issues? If

so, how did your body react to them?

Also, have many of you had miscarriages and do they believe the miscarriage

was b/c of the status of your health or b/c of something " genetically wrong "

with the baby? We need to make a decision about how many embryos to implant in

the gestational carrier. If we use two, we may end up with twins which I

don't think I could physically care for after they're born. But if we only use

one, it has less chance of " taking " . If there is an increased risk of babies

from mito moms miscarrying then we would have to weigh whether it's worth

putting two in since there may be a higher chance of one miscarrying.

So many hard decisions which don't really have one right or wrong answer. I

really believe this is a very personal decision for each family. There is

still so much unknown about mito that it makes these decisions really

difficult.

If anyone has any suggestions, we'd appreciate hearing them.

Thanks.

Malisa

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Malisa

I don't have any info, but wanted you and hubby to know that you will

be in my thoughts as you weigh the risks and make a decision.

laurie

> Hi all,

> My husband Dave and I went to an In Vitro appt at Penn yesterday. We have

> come to the conclusion that it would not be in my or the baby's best

> interest

> for me to carry a baby b/c of my presentation of mitochondrial disease.

>

> So, our options are 1. for us to use our DNA to create an embryo to be

> implanted in a gestational carrier (someone else who would carry the baby

> for

> us....either a friend or a stranger) 2. Using donated eggs and Dave's

> sperm or

> 3. adopting. The first two options would require in vitro in order to

> place

> the embryo in the other woman.

>

> I have no family history of mito and there is no guarantee that it is

> maternally inherited in me, although it is looking more suspicious based on

> the

> results of the last skin biopsy. Yet, our first choice would be to use DNA

> from

> both me and my husband. I know of families with a child with mito and a

> healthy child so there is no 100% guarantee our child would have mito even

> if we

> used my genes. There aren't any absolutes in life and even if we use

> another

> woman's egg, our child may end up with some other disease. And even if our

> child does have mito, he/she may not get symptoms of it till later in

> life...who

> knows! The physician we saw at Penn said that I was the 5th woman with

> mito

> who he has seen in the last year which surprised me. All other women were

> coming for egg donation so that they didn't have to use their own eggs.

> As far

> as cost, it is $15,000 for the in vitro if we use our DNA and $25,000 if

> we

> use an egg donor. This is without the cost of legal fees or care for the

> gestational carrier. It's a big deterrent that the donated eggs cost an

> extra

> $10,000 but if it is determined that we absolutely have to go that way

> then I

> guess we'll have to deal with it when it comes.

>

>

> The one big concern the doctor had was about me using the ovulation

> stimulating meds if we are going to use my eggs. He said that some women

> can develop

> ovarian hyperstimulation syndrome which can be pretty serious if not

> caught

> early. I would have to use the meds for 5 weeks before egg retrieval.

> Have

> any of you used any of these meds to have a child b/c of infertility

> issues? If

> so, how did your body react to them?

>

> Also, have many of you had miscarriages and do they believe the miscarriage

>

> was b/c of the status of your health or b/c of something " genetically

> wrong "

> with the baby? We need to make a decision about how many embryos to implant

> in

> the gestational carrier. If we use two, we may end up with twins which I

> don't think I could physically care for after they're born. But if we only

> use

> one, it has less chance of " taking " . If there is an increased risk of

> babies

> from mito moms miscarrying then we would have to weigh whether it's worth

> putting two in since there may be a higher chance of one miscarrying.

>

> So many hard decisions which don't really have one right or wrong answer. I

>

> really believe this is a very personal decision for each family. There is

> still so much unknown about mito that it makes these decisions really

> difficult.

> If anyone has any suggestions, we'd appreciate hearing them.

>

> Thanks.

> Malisa

>

>

>

>

>

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Wow Malisa, a lot of info at once! If it appears your case of mito

is isolated, to me that means most likely an isolated nDNA mutation -

that's what I was told. I was told by Dr. Shoffner that both me and

my husband would have to have the same nDNA mutation to have affected

children. One of my sons has a tentative mito dx, but really there

isn't much basis for it other than low muscle tone and developmental

delays that are almost resolved at the age of 5.

I wonder if TPN use is more of a risk factor than mito per se? Do

you know others on TPN who have had relatively uneventful

pregnancies? Or do you think the doctors say " mitochondrial disease

= bad pregnancy outcome for mother or baby or both " ?

I am sending good thoughts your way, it's a difficult decision to

decide whether or not to have children, and in what way to have them

when a genetic disease is involved. Remember that many of us have

seen many doctors (myself, I know it was over 20) before we got a

mito dx, so I always take each doctor's views with a grain of salt.

On a side note, my condition improved tremendously when pregnant, and

I would never give back that time of health, even though it's

possible my condition worsened in the long run.

I would be very interested to hear if others used a surrogate mother

or adopted in response to a mito dx. To me it's been such a long

battle to get a dx of " adult mito " , I'm thinking there are many of us

who just had kids without the knowledge of what was wrong. I really

don't have a feeling for how many of us have unaffected kids, and how

many have had multiple miscarriages, and how many have affected

children, and I'm thinking the latter two are more often associated

with mtDNA.

I thought the fact that you were the fifth woman with mito that the

doctor had seen was extremely interesting, and that the other four

already had made their decision to not use their own eggs. I wonder

if patients can ever be treated as individuals...

Oh, and I must have missed the possible maternal connection in your

skin biopsy results, did they do genetic testing on the sample?

Take care,

RH

>

> Hi all,

> My husband Dave and I went to an In Vitro appt at Penn yesterday.

We have

> come to the conclusion that it would not be in my or the baby's

best interest

> for me to carry a baby b/c of my presentation of mitochondrial

disease.

>

> So, our options are 1. for us to use our DNA to create an embryo to

be

> implanted in a gestational carrier (someone else who would carry

the baby for

> us....either a friend or a stranger) 2. Using donated eggs and

Dave's sperm or

> 3. adopting. The first two options would require in vitro in order

to place

> the embryo in the other woman.

>

> I have no family history of mito and there is no guarantee that it

is

> maternally inherited in me, although it is looking more suspicious

based on the

> results of the last skin biopsy. Yet, our first choice would be to

use DNA from

> both me and my husband. I know of families with a child with mito

and a

> healthy child so there is no 100% guarantee our child would have

mito even if we

> used my genes. There aren't any absolutes in life and even if we

use another

> woman's egg, our child may end up with some other disease. And

even if our

> child does have mito, he/she may not get symptoms of it till later

in life...who

> knows! The physician we saw at Penn said that I was the 5th woman

with mito

> who he has seen in the last year which surprised me. All other

women were

> coming for egg donation so that they didn't have to use their own

eggs. As far

> as cost, it is $15,000 for the in vitro if we use our DNA and

$25,000 if we

> use an egg donor. This is without the cost of legal fees or care

for the

> gestational carrier. It's a big deterrent that the donated eggs

cost an extra

> $10,000 but if it is determined that we absolutely have to go that

way then I

> guess we'll have to deal with it when it comes.

>

>

> The one big concern the doctor had was about me using the

ovulation

> stimulating meds if we are going to use my eggs. He said that some

women can develop

> ovarian hyperstimulation syndrome which can be pretty serious if

not caught

> early. I would have to use the meds for 5 weeks before egg

retrieval. Have

> any of you used any of these meds to have a child b/c of

infertility issues? If

> so, how did your body react to them?

>

> Also, have many of you had miscarriages and do they believe the

miscarriage

> was b/c of the status of your health or b/c of

something " genetically wrong "

> with the baby? We need to make a decision about how many embryos to

implant in

> the gestational carrier. If we use two, we may end up with twins

which I

> don't think I could physically care for after they're born. But if

we only use

> one, it has less chance of " taking " . If there is an increased risk

of babies

> from mito moms miscarrying then we would have to weigh whether

it's worth

> putting two in since there may be a higher chance of one

miscarrying.

>

> So many hard decisions which don't really have one right or wrong

answer. I

> really believe this is a very personal decision for each family.

There is

> still so much unknown about mito that it makes these decisions

really difficult.

> If anyone has any suggestions, we'd appreciate hearing them.

>

> Thanks.

> Malisa

>

>

>

>

>

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Hi RH,

Thanks for your response. I appreciate your suggestions.

Re: TPN and pregnancy-- I'm not sure the TPN itself is much of a risk

factor. Healthy women who have severe morning sickness and vomiting during

pregnancy often go on TPN so I think the TPN itself isn't too big of a deal. I

have a

friend who had all three of her children while on TPN. The line itself does

pose a risk if it were to get infected. They said a severe infection could

cause me to lose the baby or it could be born stillborn.

I think they are responding more to the fact that I have had such a poor

response to physical stressors lately. I was so sick after last summer's line

infection and was having autonomic changes and loss of muscle strength when

flushing only a few cc's of saline into my line. In the Fall I was losing

muscle

strength and literally couldn't stand, walk, etc. with simple infections

like a urinary tract infection that I think they're concerned about what a long

pregnancy would do to me. In the OB report, it said they were most worried

about me dying during or after pregnancy from blood clots, respiratory failure,

renal failure or infection. I already had a blood clot only about an inch

from my heart last year which required an overnight ICU stay.

I agree that it's really interesting that there were four other women who

the in vitro doc saw this year who had mito and wanted egg donation. I'm not

sure if these women then went on to carry their own pregnancies with the

donated egg or if they ended up getting a surrogate (gestational carrier). I

didn't

find out if they were severely symptomatic themselves or had children with

mito and didn't want to pass it on to other children. That's my next question

for them....!! And if they did carry the pregnancy then I wonder how they did

with it. I imagine that they already had the intention of getting an egg

donor when they came to him. I don't think he talked them into it, although he

definitely was leaning that way with us until we started challenging him about

it.

Re: the mtDNA defects in the skin--I recently received skin biopsy results

back that showed that I may have an mtDNA defect. This is brand new research so

we can't put a lot of weight on it just yet. In fact, I asked if this was

definitive and if, for our family planning, we should say it's maternally

inherited and he said to wait until they get more results in from others so they

know better what it all means. So, my guess is that I do probably have an

mtDNA defect even with a negative family history but the research is so new

that

I will have to wait till they are further along and can definitely say these

results mean something. The nuclear DNA testing was normal but the

mitochondrial DNA (mtDNA) testing in the skin showed the following--

" There was a bit of a " patchwork quilt " look to the staining in complexes I

and IV using the mitochondrial subunit antibodies, a finding that has been

reported in mtDNA defects. In sum, we suspect that there could be a

mitochondrial DNA defect present. I have asked our molecular genetics lab

director to

take a look at your mtDNA. We have been doing this staining for awhile now,

so we hope to start publishing and generating more support here. "

I appreciate your help, RH. This is SUCH a hard decision for us to make and

I'm sure it will take many conversations between me and my husband and our

families to come to a conclusion which we feel is right for us. Please

continue to offer your insights as you think of other things. I'm sure we will

flip

flop back and forth on what we want to do many, many times. But, in the end,

our hope is that whatever way we decide to go we'll have a healthy baby!

Malisa

In a message dated 4/14/2006 4:11:04 P.M. Eastern Standard Time,

rakshasis@... writes:

Wow Malisa, a lot of info at once! If it appears your case of mito

is isolated, to me that means most likely an isolated nDNA mutation -

that's what I was told. I was told by Dr. Shoffner that both me and

my husband would have to have the same nDNA mutation to have affected

children. One of my sons has a tentative mito dx, but really there

isn't much basis for it other than low muscle tone and developmental

delays that are almost resolved at the age of 5.

I wonder if TPN use is more of a risk factor than mito per se? Do

you know others on TPN who have had relatively uneventful

pregnancies? Or do you think the doctors say " mitochondrial disease

= bad pregnancy outcome for mother or baby or both " ?

I am sending good thoughts your way, it's a difficult decision to

decide whether or not to have children, and in what way to have them

when a genetic disease is involved. Remember that many of us have

seen many doctors (myself, I know it was over 20) before we got a

mito dx, so I always take each doctor's views with a grain of salt.

On a side note, my condition improved tremendously when pregnant, and

I would never give back that time of health, even though it's

possible my condition worsened in the long run.

I would be very interested to hear if others used a surrogate mother

or adopted in response to a mito dx. To me it's been such a long

battle to get a dx of " adult mito " , I'm thinking there are many of us

who just had kids without the knowledge of what was wrong. I really

don't have a feeling for how many of us have unaffected kids, and how

many have had multiple miscarriages, and how many have affected

children, and I'm thinking the latter two are more often associated

with mtDNA.

I thought the fact that you were the fifth woman with mito that the

doctor had seen was extremely interesting, and that the other four

already had made their decision to not use their own eggs. I wonder

if patients can ever be treated as individuals...

Oh, and I must have missed the possible maternal connection in your

skin biopsy results, did they do genetic testing on the sample?

Take care,

RH

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Hi Pamela,

Thanks for your thoughts.

We don't know for sure what mitochondrial defect or point mutation I have so

we can't do any testing on the embryo before implantation to determine if the

baby has it beforehand. We would have to know the specific mutation. My

muscle biopsy was normal but as I said in a recent email, my skin biopsy results

showed possible mtDNA defect in complexes 1 & 4, so it sounds like it may be

maternally inherited even though I don't have a family history of it.

Thanks for your experiences with your miscarriages too. All of your

experiences are helpful when weighing our decision. Like you, my husband feels

very

strongly that he wants only our DNA, but if that's what we do, we both have

to be willing to accept the consequences of having a child who MAY be

unhealthy. Of course, we could have a perfectly healthy child, too. I didn't get

symptoms of mito till age 14 and while I understand the logic of not wanting to

have a child who may have mito b/c of all of their suffering (and I would feel

horrible if they were sick from this!), I am also glad my mom didn't have to

make that decision before having me b/c otherwise I may not be here.

Thanks again for your thoughts! I'll let you know what is discussed at our

follow up appt next month.

Malisa

In a message dated 4/14/2006 7:14:30 P.M. Eastern Standard Time,

pamelama33@... writes:

Hi Malisa - for me in your situation I would first ascertain that your mito

is certain and maternally inherited. If so if it were me I would only want

my own eggs and husband's sperm, and assume that the eggs could be tested for

mito (is this possible yet - you would have to know the mutation to look for

is that not so?) That way you could be sure that you were in the clear.

After that I suppose there is post implantation prenatal testing by

amniocyntesis etc but that becomes complicated..... Otherwise I personally

would not

do it. My judgement is marred by the fact that at least two of my young

adult children appear to have serious mito-related problems, and just confirmed

to have the A3243G mutation. (Mind you, I wouldn't want to give them back !)

So this is in hindsight, now knowing we all have a maternally inherited

mutation.

With regard to miscarriages, I have had a few , but always felt these were

related to my body's inability to carry, rather than something being wrong

with the baby. For instance I had a baby go 24 weeks then I went into

premature

labour. She survived one day. Autopsy revealed nothing out of the

ordinary except prematurity. (Note the premature labour may have also been

caused

by other contributing factors eg my thyroid levels were low during early

pregnancy.) Another one was at 16 wks when my waters suddenly broke and

ultrasound showed baby had died in utero - further complications were that I

couldnt

be induced despite several days of Syntocinon drip and this led to a seizure

and coma (may have been something to do with the fact that I wasnt given a

catheter to let all the water out but nevertheless my mito doc is sure this was

a mito seizure/coma ). There were also several earlier miscarriages.

If you have decided not to carry a baby obviously you have carefully

considered your body's ability to do this. Perhaps you could explore further

to

ascertain whether or not your mito (presumed confirmed) is indeed maternally

inherited before unnecessarily worrying about all the possible possibilities.

With regard to heritability I have found a good website is GeneReviews who

say

" Preimplantation genetic diagnosis (PGD) may be available for families in

which the disease-causing mutation(s) has/have been identified in an affected

family member in a research or clinical laboratory. For laboratories offering

PGD, see . " They also mention DNA banking till IVF testing is more

advanced . Here is their website, for those who haven't already found it,

for

mito in general http://www.geneclinics.org/profiles/mt-overview/

There are also more specific documents in genereviews eg for those who have

MELAS go to

http://www.geneclinics.org/query?dz=melas

All the best in tackling such v important decisions. Also thanks for sharing

- it's all extremely interesting.

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Hi RH,

Thanks again! You always have such helpful points to make.

I understand your point about not doing it now b/c of what the future may

hold with research but I also don't want to wait too long b/c I have seen my

health decline over the past 13 yrs. I'm not trying to be pessimistic but want

to be realistic about my capabilities. I want to be able to actively

participate in my child's life and be able to care for a baby. That's a lot of

hard

work which I can barely handle now and have no idea how I'll be in two or three

years. Maybe I'll be better than I am now but I don't want to count on

that. If I wait 4-5 yrs, it may be too late for me to be able to take care of a

baby at that point....I just don't know and I don't want to regret anything!

As it stands now, IF we are going to go through with this now, we probably

wouldn't do it till the winter (around Jan. 07). So, we wouldn't actually have

a baby till Sept 2007. We got married in Sept 05 and started dating 8.5 yrs

ago so we'll have been with eachother for awhile. I totally believe in having

time to ourselves as a couple before jumping into parenthood but also don't

want to wait too long b/c of my heath issues. We'll both be almost 30 at that

point so I think it's a good time in our lives to start having a family.

Interesting about the research you read in Science/Nature....maybe I need to

persuade Dave to go on a trip to the beach soon! LOL Sounds like a good

enough reason to go!!! I'm really excited about the horseback riding starting

this week. And Dave is starting the lessons to be a volunteer with the adaptive

rowing program too so I can join him and we can row down the Schulykill River.

I'm really looking forward to spring and all the fun stuff we can do

together!! I'll let you know how it goes.

Malisa

In a message dated 4/14/2006 9:10:15 P.M. Eastern Standard Time,

rakshasis@... writes:

Well, I guess one thing is not to try right now! Who knows, maybe in

a few years there will be a LOT more answers for people like us. So

even if the best thing is not to get pg soon, who knows what the

future will bring?

I personally am much healthier within the last year or so due to

medication changes (one reason I'm not worried about lack of contact

from NEMC), so I like to think that hoping for an improvement, and

planning for what to do if things don't improve, is the best course

of action for mito.

Muscle weakness s**ks, and it seems to weigh on you more heavily than

being on TPN (no pun intended, that is a heavy kit!) and yeah, you're

right, there are quite a few women who have hyperemesis with no ill

effect on the child.

Pregnancy is defitely a YMMV thing, even for more common and better

studied diseases like RA and MG (or even for " healthy " folks), but

adoptions and surrogate parent(s) are YMMV too. I have a friend who

has adopted her children from Guatemala, and it sounds like I had an

easier time with my pregnancies (no epidurals even LOL) than she had

with the adoptions!

So take it easy for now, and be happy to read and learn about

options, but give yourselves some time to get to know each other

before you jump into parenthood (by whatever means). I tell my

single and newly married friends to go on vacations for me :) There

was a study published in Nature or Science recently about better

decisions being made when a difficult issue is thought about

subconsciously rather than consciously, and what better place to

think about issues subconsciously than on the beach or at the

mountains!

And good luck with the therapeutic horseback riding - I hear it's a

blast. Might be a good idea for those of us with teenagers,

especially those with limited abilities or even behavioral issues.

My son is still too young I think (he's 5), but I think he would

benefit from it.

Take care,

RH

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Hi Malisa - for me in your situation I would first ascertain that your mito is

certain and maternally inherited. If so if it were me I would only want my own

eggs and husband's sperm, and assume that the eggs could be tested for mito (is

this possible yet - you would have to know the mutation to look for is that not

so?) That way you could be sure that you were in the clear. After that I

suppose there is post implantation prenatal testing by amniocyntesis etc but

that becomes complicated..... Otherwise I personally would not do it. My

judgement is marred by the fact that at least two of my young adult children

appear to have serious mito-related problems, and just confirmed to have the

A3243G mutation. (Mind you, I wouldn't want to give them back !) So this is in

hindsight, now knowing we all have a maternally inherited mutation.

With regard to miscarriages, I have had a few , but always felt these were

related to my body's inability to carry, rather than something being wrong with

the baby. For instance I had a baby go 24 weeks then I went into premature

labour. She survived one day. Autopsy revealed nothing out of the ordinary

except prematurity. (Note the premature labour may have also been caused by

other contributing factors eg my thyroid levels were low during early

pregnancy.) Another one was at 16 wks when my waters suddenly broke and

ultrasound showed baby had died in utero - further complications were that I

couldnt be induced despite several days of Syntocinon drip and this led to a

seizure and coma (may have been something to do with the fact that I wasnt given

a catheter to let all the water out but nevertheless my mito doc is sure this

was a mito seizure/coma ). There were also several earlier miscarriages.

If you have decided not to carry a baby obviously you have carefully considered

your body's ability to do this. Perhaps you could explore further to ascertain

whether or not your mito (presumed confirmed) is indeed maternally inherited

before unnecessarily worrying about all the possible possibilities.

With regard to heritability I have found a good website is GeneReviews who say

" Preimplantation genetic diagnosis (PGD) may be available for families in which

the disease-causing mutation(s) has/have been identified in an affected family

member in a research or clinical laboratory. For laboratories offering PGD, see

.. " They also mention DNA banking till IVF testing is more advanced . Here is

their website, for those who haven't already found it, for mito in general

http://www.geneclinics.org/profiles/mt-overview/

There are also more specific documents in genereviews eg for those who have

MELAS go to

http://www.geneclinics.org/query?dz=melas

All the best in tackling such v important decisions. Also thanks for sharing -

it's all extremely interesting.

From: Malilibear@...

To:

Sent: Saturday, April 15, 2006 2:20 AM

Subject: Decisions about having a baby

Hi all,

My husband Dave and I went to an In Vitro appt at Penn yesterday. We have

come to the conclusion that it would not be in my or the baby's best interest

for me to carry a baby b/c of my presentation of mitochondrial disease.

So, our options are 1. for us to use our DNA to create an embryo to be

implanted in a gestational carrier (someone else who would carry the baby for

us....either a friend or a stranger) 2. Using donated eggs and Dave's sperm

or

3. adopting. The first two options would require in vitro in order to place

the embryo in the other woman.

I have no family history of mito and there is no guarantee that it is

maternally inherited in me, although it is looking more suspicious based on

the

results of the last skin biopsy. Yet, our first choice would be to use DNA

from

both me and my husband. I know of families with a child with mito and a

healthy child so there is no 100% guarantee our child would have mito even if

we

used my genes. There aren't any absolutes in life and even if we use another

woman's egg, our child may end up with some other disease. And even if our

child does have mito, he/she may not get symptoms of it till later in

life...who

knows! The physician we saw at Penn said that I was the 5th woman with mito

who he has seen in the last year which surprised me. All other women were

coming for egg donation so that they didn't have to use their own eggs. As

far

as cost, it is $15,000 for the in vitro if we use our DNA and $25,000 if we

use an egg donor. This is without the cost of legal fees or care for the

gestational carrier. It's a big deterrent that the donated eggs cost an extra

$10,000 but if it is determined that we absolutely have to go that way then I

guess we'll have to deal with it when it comes.

The one big concern the doctor had was about me using the ovulation

stimulating meds if we are going to use my eggs. He said that some women can

develop

ovarian hyperstimulation syndrome which can be pretty serious if not caught

early. I would have to use the meds for 5 weeks before egg retrieval. Have

any of you used any of these meds to have a child b/c of infertility issues?

If

so, how did your body react to them?

Also, have many of you had miscarriages and do they believe the miscarriage

was b/c of the status of your health or b/c of something " genetically wrong "

with the baby? We need to make a decision about how many embryos to implant in

the gestational carrier. If we use two, we may end up with twins which I

don't think I could physically care for after they're born. But if we only

use

one, it has less chance of " taking " . If there is an increased risk of babies

from mito moms miscarrying then we would have to weigh whether it's worth

putting two in since there may be a higher chance of one miscarrying.

So many hard decisions which don't really have one right or wrong answer. I

really believe this is a very personal decision for each family. There is

still so much unknown about mito that it makes these decisions really

difficult.

If anyone has any suggestions, we'd appreciate hearing them.

Thanks.

Malisa

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Guest guest

Well, I guess one thing is not to try right now! Who knows, maybe in

a few years there will be a LOT more answers for people like us. So

even if the best thing is not to get pg soon, who knows what the

future will bring?

I personally am much healthier within the last year or so due to

medication changes (one reason I'm not worried about lack of contact

from NEMC), so I like to think that hoping for an improvement, and

planning for what to do if things don't improve, is the best course

of action for mito.

Muscle weakness s**ks, and it seems to weigh on you more heavily than

being on TPN (no pun intended, that is a heavy kit!) and yeah, you're

right, there are quite a few women who have hyperemesis with no ill

effect on the child.

Pregnancy is defitely a YMMV thing, even for more common and better

studied diseases like RA and MG (or even for " healthy " folks), but

adoptions and surrogate parent(s) are YMMV too. I have a friend who

has adopted her children from Guatemala, and it sounds like I had an

easier time with my pregnancies (no epidurals even LOL) than she had

with the adoptions!

So take it easy for now, and be happy to read and learn about

options, but give yourselves some time to get to know each other

before you jump into parenthood (by whatever means). I tell my

single and newly married friends to go on vacations for me :) There

was a study published in Nature or Science recently about better

decisions being made when a difficult issue is thought about

subconsciously rather than consciously, and what better place to

think about issues subconsciously than on the beach or at the

mountains!

And good luck with the therapeutic horseback riding - I hear it's a

blast. Might be a good idea for those of us with teenagers,

especially those with limited abilities or even behavioral issues.

My son is still too young I think (he's 5), but I think he would

benefit from it.

Take care,

RH

>

>

> Hi RH,

> Thanks for your response. I appreciate your suggestions.

>

> Re: TPN and pregnancy-- I'm not sure the TPN itself is much of a

risk

> factor. Healthy women who have severe morning sickness and

vomiting during

> pregnancy often go on TPN so I think the TPN itself isn't too big

of a deal. I have a

> friend who had all three of her children while on TPN. The line

itself does

> pose a risk if it were to get infected. They said a severe

infection could

> cause me to lose the baby or it could be born stillborn.

>

> I think they are responding more to the fact that I have had such a

poor

> response to physical stressors lately. I was so sick after last

summer's line

> infection and was having autonomic changes and loss of muscle

strength when

> flushing only a few cc's of saline into my line. In the Fall I was

losing muscle

> strength and literally couldn't stand, walk, etc. with simple

infections

> like a urinary tract infection that I think they're concerned

about what a long

> pregnancy would do to me. In the OB report, it said they were most

worried

> about me dying during or after pregnancy from blood clots,

respiratory failure,

> renal failure or infection. I already had a blood clot only about

an inch

> from my heart last year which required an overnight ICU stay.

>

> I agree that it's really interesting that there were four other

women who

> the in vitro doc saw this year who had mito and wanted egg

donation. I'm not

> sure if these women then went on to carry their own pregnancies

with the

> donated egg or if they ended up getting a surrogate (gestational

carrier). I didn't

> find out if they were severely symptomatic themselves or had

children with

> mito and didn't want to pass it on to other children. That's my

next question

> for them....!! And if they did carry the pregnancy then I wonder

how they did

> with it. I imagine that they already had the intention of getting

an egg

> donor when they came to him. I don't think he talked them into it,

although he

> definitely was leaning that way with us until we started

challenging him about

> it.

>

> Re: the mtDNA defects in the skin--I recently received skin biopsy

results

> back that showed that I may have an mtDNA defect. This is brand new

research so

> we can't put a lot of weight on it just yet. In fact, I asked if

this was

> definitive and if, for our family planning, we should say it's

maternally

> inherited and he said to wait until they get more results in from

others so they

> know better what it all means. So, my guess is that I do probably

have an

> mtDNA defect even with a negative family history but the research

is so new that

> I will have to wait till they are further along and can definitely

say these

> results mean something. The nuclear DNA testing was normal but the

> mitochondrial DNA (mtDNA) testing in the skin showed the following-

-

>

> " There was a bit of a " patchwork quilt " look to the staining in

complexes I

> and IV using the mitochondrial subunit antibodies, a finding that

has been

> reported in mtDNA defects. In sum, we suspect that there could be

a

> mitochondrial DNA defect present. I have asked our molecular

genetics lab director to

> take a look at your mtDNA. We have been doing this staining for

awhile now,

> so we hope to start publishing and generating more support here. "

>

> I appreciate your help, RH. This is SUCH a hard decision for us to

make and

> I'm sure it will take many conversations between me and my husband

and our

> families to come to a conclusion which we feel is right for us.

Please

> continue to offer your insights as you think of other things. I'm

sure we will flip

> flop back and forth on what we want to do many, many times. But,

in the end,

> our hope is that whatever way we decide to go we'll have a healthy

baby!

> Malisa

>

>

>

>

>

> In a message dated 4/14/2006 4:11:04 P.M. Eastern Standard Time,

> rakshasis@... writes:

>

> Wow Malisa, a lot of info at once! If it appears your case of

mito

> is isolated, to me that means most likely an isolated nDNA

mutation -

> that's what I was told. I was told by Dr. Shoffner that both me

and

> my husband would have to have the same nDNA mutation to have

affected

> children. One of my sons has a tentative mito dx, but really

there

> isn't much basis for it other than low muscle tone and

developmental

> delays that are almost resolved at the age of 5.

>

> I wonder if TPN use is more of a risk factor than mito per se? Do

> you know others on TPN who have had relatively uneventful

> pregnancies? Or do you think the doctors say " mitochondrial

disease

> = bad pregnancy outcome for mother or baby or both " ?

>

> I am sending good thoughts your way, it's a difficult decision to

> decide whether or not to have children, and in what way to have

them

> when a genetic disease is involved. Remember that many of us have

> seen many doctors (myself, I know it was over 20) before we got a

> mito dx, so I always take each doctor's views with a grain of

salt.

> On a side note, my condition improved tremendously when pregnant,

and

> I would never give back that time of health, even though it's

> possible my condition worsened in the long run.

>

> I would be very interested to hear if others used a surrogate

mother

> or adopted in response to a mito dx. To me it's been such a long

> battle to get a dx of " adult mito " , I'm thinking there are many of

us

> who just had kids without the knowledge of what was wrong. I

really

> don't have a feeling for how many of us have unaffected kids, and

how

> many have had multiple miscarriages, and how many have affected

> children, and I'm thinking the latter two are more often

associated

> with mtDNA.

>

> I thought the fact that you were the fifth woman with mito that

the

> doctor had seen was extremely interesting, and that the other four

> already had made their decision to not use their own eggs. I

wonder

> if patients can ever be treated as individuals...

>

> Oh, and I must have missed the possible maternal connection in

your

> skin biopsy results, did they do genetic testing on the sample?

>

> Take care,

> RH

>

>

>

>

>

>

>

>

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Guest guest

Just some thoughts about children... They don't stay

babies long and they are a lot of work. My children

are both only partially diagnosed (metabolic disorder,

NOS) . I had at least one miscarriage and most likely

another one or two. My younger surviving child was

born at 22 5/7 weeks. I wonder if she was an attempted

abortion due to her health.

My son had nonspecific health issues from birth. He

didn't get really sick until about age ten. He's had

daily pain since then. He's also developed psychiatric

issues. They are quite difficult to deal with. Our

daughter has had to fight to live/be normal her whole

life. She's a wonderfully happy child but if I'd

known in advance I'd not have had either child. I LOVE

these children and am blessed to have them but I would

not willingly make a child with these difficult

issues. Parents with symptomatic mito quite often have

children with even more significant symptoms.

I'm 42 years old. My husband is quite a bit older than

I am. I'm supporting my family. I'm beginning to be

symptomatic. I'm tired. But I may well have a sick,

old husband and two sick children on my hands in 20

years. I'm already older than my husband (who is 20+

years older than I am chronologically). How will I do

this?

It takes a lot of energy to raise a child. My husband

is doing much more of the mommy stuff with our

daughter. It makes me so sad.

I am the oldest of five children. My siblings are all

adopted. There is no way that you can be sure that you

won't pass mito on to your children. Being responsible

for a child is what makes that child yours. Genetics

have little to nothing to do with it. Our was in

the hospital for her first three months. It took a

year for her to be ours because other people were

responsible for her and then I was her nurse.

I guess that I'm trying to say that this is a huge

decision. Please consider it carefully.

Mom to the two best kids in the world!

http://www.caringbridge.org/visit/thomasandkatie

__________________________________________________

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Malisa,

I do not have any experience with fertility drugs but wanted to let you know

that I admire you for all your forward thinking.

In my family my grandmother, aunt, mother, and sister all had a miscarriage, the

baby was born dead, or in my sisters case lived for an hour. My grandmother

went on to have 4 more children, my mother 3 and my sister 1. In my sisters

case it is because she started later in life due to a career. I myself, my son,

and my sisters 2 babies were all born premature. My sisters babies were born at

27 and 29 weeks.

I myself had problems getting pregnant--2 years. May have been because I was 30

or because my husband had low sperm count--he was a truck driver. My doctor told

him that due to bouncing around in a truck his sperm count could be affected--he

never went to a doc himself. He got hurt on the job in February, had to take

time off and I became pregnant in April.

Anyway, I had no problems during pregnancy until the last month. My feet were

swellen and they had to induce labor because there was not much fluid around the

baby. Actually my son was alot bigger than my mom's babies at 3, 4, and 5 lbs

and my sisters at both under 2 lbs. I chose not to have any more children

because of my age and I am not very good with kids. At that time we did not

even know about the melas in my sister or me or that my mother probably died

from it in 1988 so it was not a factor. I did know about the other miscarriages

and my sisters babies that were born at 27 and 29 weeks and was prepared for

that.

Good luck. I know you will make the right decision.

Janet Sample

Decisions about having a baby

Hi all,

My husband Dave and I went to an In Vitro appt at Penn yesterday. We have

come to the conclusion that it would not be in my or the baby's best interest

for me to carry a baby b/c of my presentation of mitochondrial disease.

So, our options are 1. for us to use our DNA to create an embryo to be

implanted in a gestational carrier (someone else who would carry the baby for

us....either a friend or a stranger) 2. Using donated eggs and Dave's sperm

or

3. adopting. The first two options would require in vitro in order to place

the embryo in the other woman.

I have no family history of mito and there is no guarantee that it is

maternally inherited in me, although it is looking more suspicious based on

the

results of the last skin biopsy. Yet, our first choice would be to use DNA

from

both me and my husband. I know of families with a child with mito and a

healthy child so there is no 100% guarantee our child would have mito even if

we

used my genes. There aren't any absolutes in life and even if we use another

woman's egg, our child may end up with some other disease. And even if our

child does have mito, he/she may not get symptoms of it till later in

life...who

knows! The physician we saw at Penn said that I was the 5th woman with mito

who he has seen in the last year which surprised me. All other women were

coming for egg donation so that they didn't have to use their own eggs. As

far

as cost, it is $15,000 for the in vitro if we use our DNA and $25,000 if we

use an egg donor. This is without the cost of legal fees or care for the

gestational carrier. It's a big deterrent that the donated eggs cost an extra

$10,000 but if it is determined that we absolutely have to go that way then I

guess we'll have to deal with it when it comes.

The one big concern the doctor had was about me using the ovulation

stimulating meds if we are going to use my eggs. He said that some women can

develop

ovarian hyperstimulation syndrome which can be pretty serious if not caught

early. I would have to use the meds for 5 weeks before egg retrieval. Have

any of you used any of these meds to have a child b/c of infertility issues?

If

so, how did your body react to them?

Also, have many of you had miscarriages and do they believe the miscarriage

was b/c of the status of your health or b/c of something " genetically wrong "

with the baby? We need to make a decision about how many embryos to implant in

the gestational carrier. If we use two, we may end up with twins which I

don't think I could physically care for after they're born. But if we only

use

one, it has less chance of " taking " . If there is an increased risk of babies

from mito moms miscarrying then we would have to weigh whether it's worth

putting two in since there may be a higher chance of one miscarrying.

So many hard decisions which don't really have one right or wrong answer. I

really believe this is a very personal decision for each family. There is

still so much unknown about mito that it makes these decisions really

difficult.

If anyone has any suggestions, we'd appreciate hearing them.

Thanks.

Malisa

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Guest guest

Ditto on do not jump into parenthood. Give yourselves time to be alone with

each other. When people say that it changes their lives it is definitely true.

All of a sudden you have to worry about them getting sick, baby sitters, who

takes time off from their job when they are sick, have to load the car with

kinds of equipment to go somewhere, etc.

Like I said, I would not change anything but having children definitely changes

your lifestyle. I guess I had always heard that but never really listened to

the meaning.

Janet Sample

Re: Decisions about having a baby

Well, I guess one thing is not to try right now! Who knows, maybe in

a few years there will be a LOT more answers for people like us. So

even if the best thing is not to get pg soon, who knows what the

future will bring?

I personally am much healthier within the last year or so due to

medication changes (one reason I'm not worried about lack of contact

from NEMC), so I like to think that hoping for an improvement, and

planning for what to do if things don't improve, is the best course

of action for mito.

Muscle weakness s**ks, and it seems to weigh on you more heavily than

being on TPN (no pun intended, that is a heavy kit!) and yeah, you're

right, there are quite a few women who have hyperemesis with no ill

effect on the child.

Pregnancy is defitely a YMMV thing, even for more common and better

studied diseases like RA and MG (or even for " healthy " folks), but

adoptions and surrogate parent(s) are YMMV too. I have a friend who

has adopted her children from Guatemala, and it sounds like I had an

easier time with my pregnancies (no epidurals even LOL) than she had

with the adoptions!

So take it easy for now, and be happy to read and learn about

options, but give yourselves some time to get to know each other

before you jump into parenthood (by whatever means). I tell my

single and newly married friends to go on vacations for me :) There

was a study published in Nature or Science recently about better

decisions being made when a difficult issue is thought about

subconsciously rather than consciously, and what better place to

think about issues subconsciously than on the beach or at the

mountains!

And good luck with the therapeutic horseback riding - I hear it's a

blast. Might be a good idea for those of us with teenagers,

especially those with limited abilities or even behavioral issues.

My son is still too young I think (he's 5), but I think he would

benefit from it.

Take care,

RH

>

>

> Hi RH,

> Thanks for your response. I appreciate your suggestions.

>

> Re: TPN and pregnancy-- I'm not sure the TPN itself is much of a

risk

> factor. Healthy women who have severe morning sickness and

vomiting during

> pregnancy often go on TPN so I think the TPN itself isn't too big

of a deal. I have a

> friend who had all three of her children while on TPN. The line

itself does

> pose a risk if it were to get infected. They said a severe

infection could

> cause me to lose the baby or it could be born stillborn.

>

> I think they are responding more to the fact that I have had such a

poor

> response to physical stressors lately. I was so sick after last

summer's line

> infection and was having autonomic changes and loss of muscle

strength when

> flushing only a few cc's of saline into my line. In the Fall I was

losing muscle

> strength and literally couldn't stand, walk, etc. with simple

infections

> like a urinary tract infection that I think they're concerned

about what a long

> pregnancy would do to me. In the OB report, it said they were most

worried

> about me dying during or after pregnancy from blood clots,

respiratory failure,

> renal failure or infection. I already had a blood clot only about

an inch

> from my heart last year which required an overnight ICU stay.

>

> I agree that it's really interesting that there were four other

women who

> the in vitro doc saw this year who had mito and wanted egg

donation. I'm not

> sure if these women then went on to carry their own pregnancies

with the

> donated egg or if they ended up getting a surrogate (gestational

carrier). I didn't

> find out if they were severely symptomatic themselves or had

children with

> mito and didn't want to pass it on to other children. That's my

next question

> for them....!! And if they did carry the pregnancy then I wonder

how they did

> with it. I imagine that they already had the intention of getting

an egg

> donor when they came to him. I don't think he talked them into it,

although he

> definitely was leaning that way with us until we started

challenging him about

> it.

>

> Re: the mtDNA defects in the skin--I recently received skin biopsy

results

> back that showed that I may have an mtDNA defect. This is brand new

research so

> we can't put a lot of weight on it just yet. In fact, I asked if

this was

> definitive and if, for our family planning, we should say it's

maternally

> inherited and he said to wait until they get more results in from

others so they

> know better what it all means. So, my guess is that I do probably

have an

> mtDNA defect even with a negative family history but the research

is so new that

> I will have to wait till they are further along and can definitely

say these

> results mean something. The nuclear DNA testing was normal but the

> mitochondrial DNA (mtDNA) testing in the skin showed the following-

-

>

> " There was a bit of a " patchwork quilt " look to the staining in

complexes I

> and IV using the mitochondrial subunit antibodies, a finding that

has been

> reported in mtDNA defects. In sum, we suspect that there could be

a

> mitochondrial DNA defect present. I have asked our molecular

genetics lab director to

> take a look at your mtDNA. We have been doing this staining for

awhile now,

> so we hope to start publishing and generating more support here. "

>

> I appreciate your help, RH. This is SUCH a hard decision for us to

make and

> I'm sure it will take many conversations between me and my husband

and our

> families to come to a conclusion which we feel is right for us.

Please

> continue to offer your insights as you think of other things. I'm

sure we will flip

> flop back and forth on what we want to do many, many times. But,

in the end,

> our hope is that whatever way we decide to go we'll have a healthy

baby!

> Malisa

>

>

>

>

>

> In a message dated 4/14/2006 4:11:04 P.M. Eastern Standard Time,

> rakshasis@... writes:

>

> Wow Malisa, a lot of info at once! If it appears your case of

mito

> is isolated, to me that means most likely an isolated nDNA

mutation -

> that's what I was told. I was told by Dr. Shoffner that both me

and

> my husband would have to have the same nDNA mutation to have

affected

> children. One of my sons has a tentative mito dx, but really

there

> isn't much basis for it other than low muscle tone and

developmental

> delays that are almost resolved at the age of 5.

>

> I wonder if TPN use is more of a risk factor than mito per se? Do

> you know others on TPN who have had relatively uneventful

> pregnancies? Or do you think the doctors say " mitochondrial

disease

> = bad pregnancy outcome for mother or baby or both " ?

>

> I am sending good thoughts your way, it's a difficult decision to

> decide whether or not to have children, and in what way to have

them

> when a genetic disease is involved. Remember that many of us have

> seen many doctors (myself, I know it was over 20) before we got a

> mito dx, so I always take each doctor's views with a grain of

salt.

> On a side note, my condition improved tremendously when pregnant,

and

> I would never give back that time of health, even though it's

> possible my condition worsened in the long run.

>

> I would be very interested to hear if others used a surrogate

mother

> or adopted in response to a mito dx. To me it's been such a long

> battle to get a dx of " adult mito " , I'm thinking there are many of

us

> who just had kids without the knowledge of what was wrong. I

really

> don't have a feeling for how many of us have unaffected kids, and

how

> many have had multiple miscarriages, and how many have affected

> children, and I'm thinking the latter two are more often

associated

> with mtDNA.

>

> I thought the fact that you were the fifth woman with mito that

the

> doctor had seen was extremely interesting, and that the other four

> already had made their decision to not use their own eggs. I

wonder

> if patients can ever be treated as individuals...

>

> Oh, and I must have missed the possible maternal connection in

your

> skin biopsy results, did they do genetic testing on the sample?

>

> Take care,

> RH

>

>

>

>

>

>

>

>

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Guest guest

Hi,

I can't offer any advise, but I did want you to know that however you

and Dave decide to make a baby part of your family, that baby will be

blessed with a great deal of love and understanding.

Hugs,

Malilibear@... wrote:

>Hi all,

>My husband Dave and I went to an In Vitro appt at Penn yesterday. We have

>come to the conclusion that it would not be in my or the baby's best interest

>for me to carry a baby b/c of my presentation of mitochondrial disease.

>

>So, our options are 1. for us to use our DNA to create an embryo to be

>implanted in a gestational carrier (someone else who would carry the baby for

>us....either a friend or a stranger) 2. Using donated eggs and Dave's sperm

or

>3. adopting. The first two options would require in vitro in order to place

>the embryo in the other woman.

>

>I have no family history of mito and there is no guarantee that it is

>maternally inherited in me, although it is looking more suspicious based on the

>results of the last skin biopsy. Yet, our first choice would be to use DNA from

>both me and my husband. I know of families with a child with mito and a

>healthy child so there is no 100% guarantee our child would have mito even if

we

>used my genes. There aren't any absolutes in life and even if we use another

>woman's egg, our child may end up with some other disease. And even if our

>child does have mito, he/she may not get symptoms of it till later in

life...who

>knows! The physician we saw at Penn said that I was the 5th woman with mito

>who he has seen in the last year which surprised me. All other women were

>coming for egg donation so that they didn't have to use their own eggs. As

far

>as cost, it is $15,000 for the in vitro if we use our DNA and $25,000 if we

>use an egg donor. This is without the cost of legal fees or care for the

>gestational carrier. It's a big deterrent that the donated eggs cost an extra

>$10,000 but if it is determined that we absolutely have to go that way then I

>guess we'll have to deal with it when it comes.

>

>

>The one big concern the doctor had was about me using the ovulation

>stimulating meds if we are going to use my eggs. He said that some women can

develop

>ovarian hyperstimulation syndrome which can be pretty serious if not caught

>early. I would have to use the meds for 5 weeks before egg retrieval. Have

>any of you used any of these meds to have a child b/c of infertility issues?

If

>so, how did your body react to them?

>

>Also, have many of you had miscarriages and do they believe the miscarriage

>was b/c of the status of your health or b/c of something " genetically wrong "

>with the baby? We need to make a decision about how many embryos to implant in

> the gestational carrier. If we use two, we may end up with twins which I

>don't think I could physically care for after they're born. But if we only use

>one, it has less chance of " taking " . If there is an increased risk of babies

>from mito moms miscarrying then we would have to weigh whether it's worth

>putting two in since there may be a higher chance of one miscarrying.

>

>So many hard decisions which don't really have one right or wrong answer. I

>really believe this is a very personal decision for each family. There is

>still so much unknown about mito that it makes these decisions really

difficult.

>If anyone has any suggestions, we'd appreciate hearing them.

>

>Thanks.

>Malisa

>

>

>

>

>

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Guest guest

Malisa, This must be a confusing time for you! Sorry you have to

deal with these decisions. I was adopted, so didn't have any medical

history until about 2 years ago. Still, the mito condition wasn't

even mentioned, even though my natural mom always complained of

being exhausted. My daughter showed symptoms when she was 21. My son

is 29 and was also tested, and the labs show that he has mito, but

isnt having any symptoms. With my third child, I had a miscarriage

at 5 mos, and didnt know at the time I had Mito, even though I've

had the symptoms since my early 20's. Now I wonder if having mito

was the reason for my miscarriage, I guess I'll never know. That's a

question I'd like to ask Dr Cohen, when we see him in a couple

weeks. I hope you have a Happy Easter, wish I could have been more

helpful.........hugs, Donna

>

> Hi all,

> My husband Dave and I went to an In Vitro appt at Penn yesterday.

We have

> come to the conclusion that it would not be in my or the baby's

best interest

> for me to carry a baby b/c of my presentation of mitochondrial

disease.

>

> So, our options are 1. for us to use our DNA to create an embryo

to be

> implanted in a gestational carrier (someone else who would carry

the baby for

> us....either a friend or a stranger) 2. Using donated eggs and

Dave's sperm or

> 3. adopting. The first two options would require in vitro in

order to place

> the embryo in the other woman.

>

> I have no family history of mito and there is no guarantee that it

is

> maternally inherited in me, although it is looking more suspicious

based on the

> results of the last skin biopsy. Yet, our first choice would be to

use DNA from

> both me and my husband. I know of families with a child with mito

and a

> healthy child so there is no 100% guarantee our child would have

mito even if we

> used my genes. There aren't any absolutes in life and even if we

use another

> woman's egg, our child may end up with some other disease. And

even if our

> child does have mito, he/she may not get symptoms of it till

later in life...who

> knows! The physician we saw at Penn said that I was the 5th woman

with mito

> who he has seen in the last year which surprised me. All other

women were

> coming for egg donation so that they didn't have to use their own

eggs. As far

> as cost, it is $15,000 for the in vitro if we use our DNA and

$25,000 if we

> use an egg donor. This is without the cost of legal fees or care

for the

> gestational carrier. It's a big deterrent that the donated eggs

cost an extra

> $10,000 but if it is determined that we absolutely have to go

that way then I

> guess we'll have to deal with it when it comes.

>

>

> The one big concern the doctor had was about me using the

ovulation

> stimulating meds if we are going to use my eggs. He said that some

women can develop

> ovarian hyperstimulation syndrome which can be pretty serious if

not caught

> early. I would have to use the meds for 5 weeks before egg

retrieval. Have

> any of you used any of these meds to have a child b/c of

infertility issues? If

> so, how did your body react to them?

>

> Also, have many of you had miscarriages and do they believe the

miscarriage

> was b/c of the status of your health or b/c of

something " genetically wrong "

> with the baby? We need to make a decision about how many embryos

to implant in

> the gestational carrier. If we use two, we may end up with twins

which I

> don't think I could physically care for after they're born. But

if we only use

> one, it has less chance of " taking " . If there is an increased

risk of babies

> from mito moms miscarrying then we would have to weigh whether

it's worth

> putting two in since there may be a higher chance of one

miscarrying.

>

> So many hard decisions which don't really have one right or wrong

answer. I

> really believe this is a very personal decision for each family.

There is

> still so much unknown about mito that it makes these decisions

really difficult.

> If anyone has any suggestions, we'd appreciate hearing them.

>

> Thanks.

> Malisa

>

>

>

>

>

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Hi Donna - just wondering, how is your daughter now, and how old is she? pamela

Re: Decisions about having a baby

Malisa, This must be a confusing time for you! Sorry you have to

deal with these decisions. I was adopted, so didn't have any medical

history until about 2 years ago. Still, the mito condition wasn't

even mentioned, even though my natural mom always complained of

being exhausted. My daughter showed symptoms when she was 21. My son

is 29 and was also tested, and the labs show that he has mito, but

isnt having any symptoms. With my third child, I had a miscarriage

at 5 mos, and didnt know at the time I had Mito, even though I've

had the symptoms since my early 20's. Now I wonder if having mito

was the reason for my miscarriage, I guess I'll never know. That's a

question I'd like to ask Dr Cohen, when we see him in a couple

weeks. I hope you have a Happy Easter, wish I could have been more

helpful.........hugs, Donna

>

> Hi all,

> My husband Dave and I went to an In Vitro appt at Penn yesterday.

We have

> come to the conclusion that it would not be in my or the baby's

best interest

> for me to carry a baby b/c of my presentation of mitochondrial

disease.

>

> So, our options are 1. for us to use our DNA to create an embryo

to be

> implanted in a gestational carrier (someone else who would carry

the baby for

> us....either a friend or a stranger) 2. Using donated eggs and

Dave's sperm or

> 3. adopting. The first two options would require in vitro in

order to place

> the embryo in the other woman.

>

> I have no family history of mito and there is no guarantee that it

is

> maternally inherited in me, although it is looking more suspicious

based on the

> results of the last skin biopsy. Yet, our first choice would be to

use DNA from

> both me and my husband. I know of families with a child with mito

and a

> healthy child so there is no 100% guarantee our child would have

mito even if we

> used my genes. There aren't any absolutes in life and even if we

use another

> woman's egg, our child may end up with some other disease. And

even if our

> child does have mito, he/she may not get symptoms of it till

later in life...who

> knows! The physician we saw at Penn said that I was the 5th woman

with mito

> who he has seen in the last year which surprised me. All other

women were

> coming for egg donation so that they didn't have to use their own

eggs. As far

> as cost, it is $15,000 for the in vitro if we use our DNA and

$25,000 if we

> use an egg donor. This is without the cost of legal fees or care

for the

> gestational carrier. It's a big deterrent that the donated eggs

cost an extra

> $10,000 but if it is determined that we absolutely have to go

that way then I

> guess we'll have to deal with it when it comes.

>

>

> The one big concern the doctor had was about me using the

ovulation

> stimulating meds if we are going to use my eggs. He said that some

women can develop

> ovarian hyperstimulation syndrome which can be pretty serious if

not caught

> early. I would have to use the meds for 5 weeks before egg

retrieval. Have

> any of you used any of these meds to have a child b/c of

infertility issues? If

> so, how did your body react to them?

>

> Also, have many of you had miscarriages and do they believe the

miscarriage

> was b/c of the status of your health or b/c of

something " genetically wrong "

> with the baby? We need to make a decision about how many embryos

to implant in

> the gestational carrier. If we use two, we may end up with twins

which I

> don't think I could physically care for after they're born. But

if we only use

> one, it has less chance of " taking " . If there is an increased

risk of babies

> from mito moms miscarrying then we would have to weigh whether

it's worth

> putting two in since there may be a higher chance of one

miscarrying.

>

> So many hard decisions which don't really have one right or wrong

answer. I

> really believe this is a very personal decision for each family.

There is

> still so much unknown about mito that it makes these decisions

really difficult.

> If anyone has any suggestions, we'd appreciate hearing them.

>

> Thanks.

> Malisa

>

>

>

>

>

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I for one don't feel that anything my husband does for our kids is

lost by me. One thing I think having a chronic illness has done for

me is opened my heart to let people do things for me, and not regret

the need for their help. Gender roles of parents just don't matter

that much to me anymore, neither does what other people think of our

marriage or family. What matters is that we do the best we can, and

we are happy. If my son has to be institutionalized (which seemed

probable a few years ago, and hopefully at this point won't occur),

his smile and company is still enough for me to not regret his birth.

Take care,

RH

>

> Just some thoughts about children... They don't stay

> babies long and they are a lot of work. My children

> are both only partially diagnosed (metabolic disorder,

> NOS) . I had at least one miscarriage and most likely

> another one or two. My younger surviving child was

> born at 22 5/7 weeks. I wonder if she was an attempted

> abortion due to her health.

>

> My son had nonspecific health issues from birth. He

> didn't get really sick until about age ten. He's had

> daily pain since then. He's also developed psychiatric

> issues. They are quite difficult to deal with. Our

> daughter has had to fight to live/be normal her whole

> life. She's a wonderfully happy child but if I'd

> known in advance I'd not have had either child. I LOVE

> these children and am blessed to have them but I would

> not willingly make a child with these difficult

> issues. Parents with symptomatic mito quite often have

> children with even more significant symptoms.

>

> I'm 42 years old. My husband is quite a bit older than

> I am. I'm supporting my family. I'm beginning to be

> symptomatic. I'm tired. But I may well have a sick,

> old husband and two sick children on my hands in 20

> years. I'm already older than my husband (who is 20+

> years older than I am chronologically). How will I do

> this?

>

> It takes a lot of energy to raise a child. My husband

> is doing much more of the mommy stuff with our

> daughter. It makes me so sad.

>

> I am the oldest of five children. My siblings are all

> adopted. There is no way that you can be sure that you

> won't pass mito on to your children. Being responsible

> for a child is what makes that child yours. Genetics

> have little to nothing to do with it. Our was in

> the hospital for her first three months. It took a

> year for her to be ours because other people were

> responsible for her and then I was her nurse.

>

> I guess that I'm trying to say that this is a huge

> decision. Please consider it carefully.

>

>

>

> Mom to the two best kids in the world!

> http://www.caringbridge.org/visit/thomasandkatie

>

> __________________________________________________

>

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Note that miscarriages are common in the general population (20+% of

pregnancies), especially in the first trimester. Here's some info on

a recent study on IVF etc. and miscarriages:

http://www.webmd.com/content/article/64/72351.htm

Unfortunately most people who have miscarriages don't get any answers

as to why, and doctors don't seem to care with the first few a woman

has (I have been on several pregnancy lists, and hear a lot about

that experience and had a miscarriage myself, YMMV).

Take care,

RH

> >

> > Hi all,

> > My husband Dave and I went to an In Vitro appt at Penn yesterday.

> We have

> > come to the conclusion that it would not be in my or the baby's

> best interest

> > for me to carry a baby b/c of my presentation of mitochondrial

> disease.

> >

> > So, our options are 1. for us to use our DNA to create an embryo

> to be

> > implanted in a gestational carrier (someone else who would carry

> the baby for

> > us....either a friend or a stranger) 2. Using donated eggs and

> Dave's sperm or

> > 3. adopting. The first two options would require in vitro in

> order to place

> > the embryo in the other woman.

> >

> > I have no family history of mito and there is no guarantee that

it

> is

> > maternally inherited in me, although it is looking more

suspicious

> based on the

> > results of the last skin biopsy. Yet, our first choice would be

to

> use DNA from

> > both me and my husband. I know of families with a child with mito

> and a

> > healthy child so there is no 100% guarantee our child would have

> mito even if we

> > used my genes. There aren't any absolutes in life and even if we

> use another

> > woman's egg, our child may end up with some other disease. And

> even if our

> > child does have mito, he/she may not get symptoms of it till

> later in life...who

> > knows! The physician we saw at Penn said that I was the 5th

woman

> with mito

> > who he has seen in the last year which surprised me. All other

> women were

> > coming for egg donation so that they didn't have to use their

own

> eggs. As far

> > as cost, it is $15,000 for the in vitro if we use our DNA and

> $25,000 if we

> > use an egg donor. This is without the cost of legal fees or care

> for the

> > gestational carrier. It's a big deterrent that the donated eggs

> cost an extra

> > $10,000 but if it is determined that we absolutely have to go

> that way then I

> > guess we'll have to deal with it when it comes.

> >

> >

> > The one big concern the doctor had was about me using the

> ovulation

> > stimulating meds if we are going to use my eggs. He said that

some

> women can develop

> > ovarian hyperstimulation syndrome which can be pretty serious if

> not caught

> > early. I would have to use the meds for 5 weeks before egg

> retrieval. Have

> > any of you used any of these meds to have a child b/c of

> infertility issues? If

> > so, how did your body react to them?

> >

> > Also, have many of you had miscarriages and do they believe the

> miscarriage

> > was b/c of the status of your health or b/c of

> something " genetically wrong "

> > with the baby? We need to make a decision about how many embryos

> to implant in

> > the gestational carrier. If we use two, we may end up with twins

> which I

> > don't think I could physically care for after they're born. But

> if we only use

> > one, it has less chance of " taking " . If there is an increased

> risk of babies

> > from mito moms miscarrying then we would have to weigh whether

> it's worth

> > putting two in since there may be a higher chance of one

> miscarrying.

> >

> > So many hard decisions which don't really have one right or wrong

> answer. I

> > really believe this is a very personal decision for each family.

> There is

> > still so much unknown about mito that it makes these decisions

> really difficult.

> > If anyone has any suggestions, we'd appreciate hearing them.

> >

> > Thanks.

> > Malisa

> >

> >

> >

> >

> >

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You're welcome, hopefully at least my posts make people think :) I

am a pretty optimistic person, which started when I met my husband,

and got reinforced when I started my mito symptoms (and my husband's

response to my illness :). I'm sure you and your husband will make

the best decision for you, and if there are bumps in the road, you'll

deal with them. In a way I think pregnancy prepares us for taking

care of a baby; I really feel for people who adopt or use a surrogate

mother, it must be more difficult in some ways.

Take care,

RH

>

>

> Hi RH,

> Thanks again! You always have such helpful points to make.

>

> I understand your point about not doing it now b/c of what the

future may

> hold with research but I also don't want to wait too long b/c I

have seen my

> health decline over the past 13 yrs. I'm not trying to be

pessimistic but want

> to be realistic about my capabilities. I want to be able to

actively

> participate in my child's life and be able to care for a baby.

That's a lot of hard

> work which I can barely handle now and have no idea how I'll be in

two or three

> years. Maybe I'll be better than I am now but I don't want to

count on

> that. If I wait 4-5 yrs, it may be too late for me to be able to

take care of a

> baby at that point....I just don't know and I don't want to regret

anything!

>

> As it stands now, IF we are going to go through with this now, we

probably

> wouldn't do it till the winter (around Jan. 07). So, we wouldn't

actually have

> a baby till Sept 2007. We got married in Sept 05 and started

dating 8.5 yrs

> ago so we'll have been with eachother for awhile. I totally believe

in having

> time to ourselves as a couple before jumping into parenthood but

also don't

> want to wait too long b/c of my heath issues. We'll both be almost

30 at that

> point so I think it's a good time in our lives to start having a

family.

>

> Interesting about the research you read in Science/Nature....maybe

I need to

> persuade Dave to go on a trip to the beach soon! LOL Sounds like a

good

> enough reason to go!!! I'm really excited about the horseback

riding starting

> this week. And Dave is starting the lessons to be a volunteer with

the adaptive

> rowing program too so I can join him and we can row down the

Schulykill River.

> I'm really looking forward to spring and all the fun stuff we can

do

> together!! I'll let you know how it goes.

>

> Malisa

>

> In a message dated 4/14/2006 9:10:15 P.M. Eastern Standard Time,

> rakshasis@... writes:

>

> Well, I guess one thing is not to try right now! Who knows, maybe

in

> a few years there will be a LOT more answers for people like us.

So

> even if the best thing is not to get pg soon, who knows what the

> future will bring?

>

> I personally am much healthier within the last year or so due to

> medication changes (one reason I'm not worried about lack of

contact

> from NEMC), so I like to think that hoping for an improvement, and

> planning for what to do if things don't improve, is the best course

> of action for mito.

>

> Muscle weakness s**ks, and it seems to weigh on you more heavily

than

> being on TPN (no pun intended, that is a heavy kit!) and yeah,

you're

> right, there are quite a few women who have hyperemesis with no

ill

> effect on the child.

>

> Pregnancy is defitely a YMMV thing, even for more common and

better

> studied diseases like RA and MG (or even for " healthy " folks), but

> adoptions and surrogate parent(s) are YMMV too. I have a friend

who

> has adopted her children from Guatemala, and it sounds like I had

an

> easier time with my pregnancies (no epidurals even LOL) than she

had

> with the adoptions!

>

> So take it easy for now, and be happy to read and learn about

> options, but give yourselves some time to get to know each other

> before you jump into parenthood (by whatever means). I tell my

> single and newly married friends to go on vacations for me :)

There

> was a study published in Nature or Science recently about better

> decisions being made when a difficult issue is thought about

> subconsciously rather than consciously, and what better place to

> think about issues subconsciously than on the beach or at the

> mountains!

>

> And good luck with the therapeutic horseback riding - I hear it's

a

> blast. Might be a good idea for those of us with teenagers,

> especially those with limited abilities or even behavioral

issues.

> My son is still too young I think (he's 5), but I think he would

> benefit from it.

>

> Take care,

> RH

>

>

>

>

>

>

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--- ohgminion rakshasis@...> wrote:

> I for one don't feel that anything my husband does

> for our kids is

> lost by me. If my son has to be institutionalized

> (which seemed

> probable a few years ago, and hopefully at this

> point won't occur),

> his smile and company is still enough for me to not

> regret his birth.

I don't feel that what my husband does for our kids is

a bad thing. I just wish I could do more. It makes my

heart quite happy to see how much she is loved by and

loves her daddy. I do know that she craves more of me.

I just wish I could give it.

I do not regret the wonderful gift that my children

are. They are great kids and are very well loved. But

is hard to be a kid--any kid. I just wouldn't have

knowingly brought them in to this world to be ill. My

son, for example, is in bed. It's after noon on Easter

and he's too sick to go to Grandma and Grandpa's. He

loves to go there. He used to be able to do those

things. Now he can't and he hates that. He knows what

it's like to be healthy and it is very difficult for

him psychologically to be ill. My daughter has always

had difficulty with her health so she does not know

anything different. She's happy.

I don't regret my children's births. We made the best

decisions we could have made at that time. My son had

multiple surgeries as an infant/young child for

recurrent airway growths. We didn't want this for

another child. We asked the doc if this would happen

again. He said he'd never seen it before so we had our

.

These decisions are all very personal. What is right

for one family is not necessarily right for another. I

can't stand to see my kids in the pain they are in.

The very best week ever results in pain at least three

days a week for both. Adoption was a consideration

after . We didn't want to try again after her

because of her extreme prematurity and the loss of the

other baby. For us, though, it would not be fair to

bring a child into our family. My fatigue is just too

intense; our current children require too much work.

But I will always ache for another child.

The purpose of my comments is not to hurt anybody or

to sway anybody's decisions. I can't know what is

right for anybody else's family. These are just

important decisions that need to be made after careful consideration.

Mom to the two best kids in the world!

http://www.caringbridge.org/visit/thomasandkatie

__________________________________________________

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Hi Pamela, hope you are doing well. My daughter is no better after

being diagnosed 2 yrs ago. Even after being on the Mito cocktail, no

improvement. is 23 and will turn 24 next month, and I have

to say, I am blessed to have such a wonderful daughter! God Bless

You.........Hugs, Donna

> >

> > Hi all,

> > My husband Dave and I went to an In Vitro appt at Penn

yesterday.

> We have

> > come to the conclusion that it would not be in my or the

baby's

> best interest

> > for me to carry a baby b/c of my presentation of mitochondrial

> disease.

> >

> > So, our options are 1. for us to use our DNA to create an

embryo

> to be

> > implanted in a gestational carrier (someone else who would

carry

> the baby for

> > us....either a friend or a stranger) 2. Using donated eggs and

> Dave's sperm or

> > 3. adopting. The first two options would require in vitro in

> order to place

> > the embryo in the other woman.

> >

> > I have no family history of mito and there is no guarantee

that it

> is

> > maternally inherited in me, although it is looking more

suspicious

> based on the

> > results of the last skin biopsy. Yet, our first choice would

be to

> use DNA from

> > both me and my husband. I know of families with a child with

mito

> and a

> > healthy child so there is no 100% guarantee our child would

have

> mito even if we

> > used my genes. There aren't any absolutes in life and even if

we

> use another

> > woman's egg, our child may end up with some other disease.

And

> even if our

> > child does have mito, he/she may not get symptoms of it till

> later in life...who

> > knows! The physician we saw at Penn said that I was the 5th

woman

> with mito

> > who he has seen in the last year which surprised me. All

other

> women were

> > coming for egg donation so that they didn't have to use their

own

> eggs. As far

> > as cost, it is $15,000 for the in vitro if we use our DNA and

> $25,000 if we

> > use an egg donor. This is without the cost of legal fees or

care

> for the

> > gestational carrier. It's a big deterrent that the donated

eggs

> cost an extra

> > $10,000 but if it is determined that we absolutely have to go

> that way then I

> > guess we'll have to deal with it when it comes.

> >

> >

> > The one big concern the doctor had was about me using the

> ovulation

> > stimulating meds if we are going to use my eggs. He said that

some

> women can develop

> > ovarian hyperstimulation syndrome which can be pretty serious

if

> not caught

> > early. I would have to use the meds for 5 weeks before egg

> retrieval. Have

> > any of you used any of these meds to have a child b/c of

> infertility issues? If

> > so, how did your body react to them?

> >

> > Also, have many of you had miscarriages and do they believe

the

> miscarriage

> > was b/c of the status of your health or b/c of

> something " genetically wrong "

> > with the baby? We need to make a decision about how many

embryos

> to implant in

> > the gestational carrier. If we use two, we may end up with

twins

> which I

> > don't think I could physically care for after they're born.

But

> if we only use

> > one, it has less chance of " taking " . If there is an increased

> risk of babies

> > from mito moms miscarrying then we would have to weigh

whether

> it's worth

> > putting two in since there may be a higher chance of one

> miscarrying.

> >

> > So many hard decisions which don't really have one right or

wrong

> answer. I

> > really believe this is a very personal decision for each

family.

> There is

> > still so much unknown about mito that it makes these

decisions

> really difficult.

> > If anyone has any suggestions, we'd appreciate hearing them.

> >

> > Thanks.

> > Malisa

> >

> >

> >

> >

> >

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Dear ,

My heart goes out to you and your husband. I have watched my daughter go

through this and she is still in a muddle. No answer is " fool proof. " Every

procedure has questions, incomplete answers, and answers that still leave you

with risks.

I don't know what your percent heteroplasmy is but even then each ovum has a

different per cent. My daughter saw a company in Chicago (?) that is

supposed to look at the DNA of one of the early cells of an embryo to determine

if

there is a defect but they had never done it for mtDNA. Then there is the

transplant of the nucleus of your ovum to a donor cell from which the donor

nucleus has been removed. This removes some of the defective mitochondria but

a

few can remain attached to the nucleus when the your nucleus is washed

before transfer. Sperm can be fractionated for sex determination so in having

a

son the defect stops with that generation. But of course the child will have

a mitochondrial disease anyway. A donor egg is not screened for defects,

only a family history is taken so there is plenty of room for a mitochondrial

or

any other genetic disorder to be present. Surrogate mothers themselves are

also a source of risk. Others have mentioned the problems in adopting. I

can second that as a neighbor adopted a little girl from Russia over a year

ago. The process took 18 months and 2 months in residence in Russia to

complete

the transaction.

Solution? None are satisfactory. Perhaps you could volunteer as a baby

cuddler for an intensive care nursery or work with the Girl Scouts. How about

leading a Brownie Troop or working in a daycare center at a local community

college? If the extra exertion becomes harmful to you, you would know that

motherhood in any form would be difficult, not just the pregnancy. Although

both my pregnancies were fraught with every difficulty imaginable and yes, I

did

have one miscarriage and spent over three years trying to become pregnant

each time, it was the years before they attended school that had me exhausted.

I was never so tired in my life as when they were less than 5 years old.

There are no rights or wrongs just risks. But having said that I would not

trade my now-adult children for any other experience in my life. Fortunately

I was not diagnosed until 5 years ago so I did not make the motherhood

decision knowing what my daughter knows.

Know that whatever you do, we are still here and still behind you.

a (MELAS)

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Thanks for replying Donna. So we both have daughters around the same age (Penny

is 22), both with a dx and showing symptoms, and we are both blessed to have

such wonderful daughters! We will have to compare notes from time to time.

pamela

Re: Decisions about having a baby

Hi Pamela, hope you are doing well. My daughter is no better after

being diagnosed 2 yrs ago. Even after being on the Mito cocktail, no

improvement. is 23 and will turn 24 next month, and I have

to say, I am blessed to have such a wonderful daughter! God Bless

You.........Hugs, Donna

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I just want to take a minute to thank all of you who responded about the

baby question. I know all of you can relate to what a challenging question it is

when there are so few answers out there about mito and how likely it is to

get passed on. Even though it seems like a high likelihood it will get

transmitted to future children, it seems to vary with each person, each family.

My husband and I have been doing a lot of talking and we're going to talk to

a couple of the mito docs who are doing research. Hopefully we'll get some

sort of guidance, but in the end I know it'll be our decision about whether we

want to take the chance or not. Either way, we also want to have the support

of our families around us.

So, anyway, thanks again! I appreciate your combined wisdom and guidance.

Malisa

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