Re: say a little prayer for us

[Guest guest]

good luck!!

you will be in our thoughts!

Keely

>

> me and my husband are now trying for the baby once again after the

> death of our baby who was possibly a mito. we are hoping for a boy

> so that he cannot have chances of giving it to his kids.

> please remeber us in ur prayers. thanks all

> and o by the way what tests should be done once the baby is

> born ?????

[Guest guest]

May you be blessed with a healthy child.

Cyndy, aunti to Ari, unknown mito

ayesha wrote:

me and my husband are now trying for the baby once again after the death of our baby who was possibly a mito. we are hoping for a boy so that he cannot have chances of giving it to his kids. please remeber us in ur prayers. thanks all and o by the way what tests should be done once the baby is born ?????Please contact mito-owner with any problems or questions. __________________________________________________

[Guest guest]

Hi Ayesha,

I don't have an answer to your question about what tests should be

done, that is a good question. I am wondering as well. I do want

to say that our prayers and blessings are for you to experience a

blessing and miracle in your future babies. Best wishes, Joni

>

> me and my husband are now trying for the baby once again after the

> death of our baby who was possibly a mito. we are hoping for a boy

> so that he cannot have chances of giving it to his kids.

> please remeber us in ur prayers. thanks all

> and o by the way what tests should be done once the baby is

> born ?????

[Guest guest]

Hi Ayesha,

I don't have an answer to your question about what tests should be

done, that is a good question. I am wondering as well. I do want

to say that our prayers and blessings are for you to experience a

blessing and miracle in your future babies. Best wishes, Joni

>

> me and my husband are now trying for the baby once again after the

> death of our baby who was possibly a mito. we are hoping for a boy

> so that he cannot have chances of giving it to his kids.

> please remeber us in ur prayers. thanks all

> and o by the way what tests should be done once the baby is

> born ?????

[Guest guest]

Dear Ayesha,

I will be praying for you that you get pregnant with a non mito healthy

baby. As for tests to be done, that would probably be a real tough one if

you do not know the exact form that your child had when they died. That is

definitely an important thing to find out from a mito specialist. You can

always ask questions to mito docs on the UMDF website. I did that once, but

their answers are usually very vague because they do not want to be

responsible for giving you wrong answers if they do not have any information

about you, but it is worth a shot. Definitely, though, I am sure that they

need to know the form your baby died from. Also, you can e-mail mito docs

when you have question one on one and sometimes they can be helpful. The

UMDF can probably give you the e-mail for specific mito specialists and you

can communicate back and forth since you are in a foreign country. Do they

have miti specialist where you live? If not, try to contact one in the US

that will be willing to work with a medical genetics doctor there. That is

the best advice I can think of. Good luck,

 

 

Suhad Haddad  --  Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna

with same disease.

Samya's Memorial Site: www.samyahaddad.com/.org/.net

Email: Suhad1970@...

Alt Email: Suhad@...

AiM Chat: Suhad1970

say a little prayer for us

me and my husband are now trying for the baby once again after the

death of our baby who was possibly a mito. we are hoping for a boy

so that he cannot have chances of giving it to his kids.

please remeber us in ur prayers. thanks all

and o by the way what tests should be done once the baby is

born ?????

Please contact mito-owner with any problems or questions.

[Guest guest]

Dear Ayesha,

I will be praying for you that you get pregnant with a non mito healthy

baby. As for tests to be done, that would probably be a real tough one if

you do not know the exact form that your child had when they died. That is

definitely an important thing to find out from a mito specialist. You can

always ask questions to mito docs on the UMDF website. I did that once, but

their answers are usually very vague because they do not want to be

responsible for giving you wrong answers if they do not have any information

about you, but it is worth a shot. Definitely, though, I am sure that they

need to know the form your baby died from. Also, you can e-mail mito docs

when you have question one on one and sometimes they can be helpful. The

UMDF can probably give you the e-mail for specific mito specialists and you

can communicate back and forth since you are in a foreign country. Do they

have miti specialist where you live? If not, try to contact one in the US

that will be willing to work with a medical genetics doctor there. That is

the best advice I can think of. Good luck,

 

 

Suhad Haddad  --  Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna

with same disease.

Samya's Memorial Site: www.samyahaddad.com/.org/.net

Email: Suhad1970@...

Alt Email: Suhad@...

AiM Chat: Suhad1970

say a little prayer for us

me and my husband are now trying for the baby once again after the

death of our baby who was possibly a mito. we are hoping for a boy

so that he cannot have chances of giving it to his kids.

please remeber us in ur prayers. thanks all

and o by the way what tests should be done once the baby is

born ?????

Please contact mito-owner with any problems or questions.

[Guest guest]

Best wishes on your baby. Did they tell you that your childs mito was maternally inherited? If not it really does not matter if you have a boy or a girl, it all depends on a gene they carry or not. Our daughters mito came from both my husband and myself carrying the gene. From what we were told our (healthy) children (if they even carry the gene) would have over a one in 40,000 chance of finding someone else that carry's the gene.

Also we just had a new baby since Grace. We asked Dr. Cohen what we should test for, since he is the only other child we have together. (We have both been married before.) He did not recomend any testing other than our states normal newborn screening. We live in Ohio and they have just recently included many new conditions. He told us that most likely something would be somewhat abnormal if had mito too. I would contact a genetic counselor before getting pregnant so you can know what exactly you can expect.

Best wishes.

Find the music you love on MSN Music. Start downloading now!

[Guest guest]

hi

thanks for the reply

please i need alot of answers. i have no clue if my bay hadmaternal or both parents have it. the thing is that she died without any diagnosis. i live in a very veryv very veryveryvery pooor country and we donot have genetic counslers and such fancy people. godddd i feeel so frusterated. what can i do , awll i have now from my dead baby is a few hair and a paiece of cloth with her blood.

ok how do u find out if it is maternal or not??////////???please tell me i feel like committing suiicde really. y is this disease so horrible/

ayesha wrote:

Best wishes on your baby. Did they tell you that your childs mito was maternally inherited? If not it really does not matter if you have a boy or a girl, it all depends on a gene they carry or not. Our daughters mito came from both my husband and myself carrying the gene. From what we were told our (healthy) children (if they even carry the gene) would have over a one in 40,000 chance of finding someone else that carry's the gene.

Also we just had a new baby since Grace. We asked Dr. Cohen what we should test for, since he is the only other child we have together. (We have both been married before.) He did not recomend any testing other than our states normal newborn screening. We live in Ohio and they have just recently included many new conditions. He told us that most likely something would be somewhat abnormal if had mito too. I would contact a genetic counselor before getting pregnant so you can know what exactly you can expect.

Best wishes.

Find the music you love on MSN Music. Start downloading now! Please contact mito-owner with any problems or questions.

takecare,love.................... ayesha__________________________________________________

[Guest guest]

hi

thanks for the reply

please i need alot of answers. i have no clue if my bay hadmaternal or both parents have it. the thing is that she died without any diagnosis. i live in a very veryv very veryveryvery pooor country and we donot have genetic counslers and such fancy people. godddd i feeel so frusterated. what can i do , awll i have now from my dead baby is a few hair and a paiece of cloth with her blood.

ok how do u find out if it is maternal or not??////////???please tell me i feel like committing suiicde really. y is this disease so horrible/

ayesha wrote:

Best wishes on your baby. Did they tell you that your childs mito was maternally inherited? If not it really does not matter if you have a boy or a girl, it all depends on a gene they carry or not. Our daughters mito came from both my husband and myself carrying the gene. From what we were told our (healthy) children (if they even carry the gene) would have over a one in 40,000 chance of finding someone else that carry's the gene.

Also we just had a new baby since Grace. We asked Dr. Cohen what we should test for, since he is the only other child we have together. (We have both been married before.) He did not recomend any testing other than our states normal newborn screening. We live in Ohio and they have just recently included many new conditions. He told us that most likely something would be somewhat abnormal if had mito too. I would contact a genetic counselor before getting pregnant so you can know what exactly you can expect.

Best wishes.

Find the music you love on MSN Music. Start downloading now! Please contact mito-owner with any problems or questions.

takecare,love.................... ayesha__________________________________________________

[Guest guest]

I agree, this disease is horrible. I'm not really sure how they determine if it is maternally inherited or not. If you do have a lock of hair or some blood they can probally run DNA testing on it. I don't know if they can tell you much from that or not. There are some specific types of mito that they have found the particular gene for. If your child would have had one of those types they could give you much better odds. Gene therapy is also very expensive and you may not get any answers from it, but maybe it would be worth the try for you. Maybe if you can get in contact with the UMDF, they can lead you in a direction on how to do this.

When we decided to try for another child we just put it in Gods hands. We knew our odds of having another mito baby would be 1/4. Also we understood that if the baby did have mito it may be more or less severe than Grace. Our new baby is now 11 weeks old (tomorrow) and so far is showing no signs of mito. I guess we are blessed. I pray your family is able to have another child, and that your new baby is healthy.

Best wishes.

Rock, jazz, country, soul more. Find the music you love on MSN Music!

[Guest guest]

I agree, this disease is horrible. I'm not really sure how they determine if it is maternally inherited or not. If you do have a lock of hair or some blood they can probally run DNA testing on it. I don't know if they can tell you much from that or not. There are some specific types of mito that they have found the particular gene for. If your child would have had one of those types they could give you much better odds. Gene therapy is also very expensive and you may not get any answers from it, but maybe it would be worth the try for you. Maybe if you can get in contact with the UMDF, they can lead you in a direction on how to do this.

When we decided to try for another child we just put it in Gods hands. We knew our odds of having another mito baby would be 1/4. Also we understood that if the baby did have mito it may be more or less severe than Grace. Our new baby is now 11 weeks old (tomorrow) and so far is showing no signs of mito. I guess we are blessed. I pray your family is able to have another child, and that your new baby is healthy.

Best wishes.

Rock, jazz, country, soul more. Find the music you love on MSN Music!

[Guest guest]

Ayesha,

You have done nothing " to deserve this " !

This is not a punishment from God. This is just a horrible thing that

can happen. Actually the more I learn about how a person's body

works, the more amazed I am that more things don't go wrong. There

are people who are bad who have good things happen to them and people

who are good who have bad things happen to them. I read a story once

that people's lives are like tapestries. We are so close and in the

picture that we can't see what the picture is. Out lives weave

through other peoples' lives to form the picture. We can't see why

our kids lives are so short and so hard. Some day we may see that

their sparkle brightened up our whole section of the picture and how

many changes they made because of the lives they touched.

I am very sorry for the child you lost.

I used to say I could not think of anything worse than a parent losing

a child. Now, I think that have a child suffering that you can't help

is worse.

Thinking of you and not knowing what to say to help.

Sorry,

Twana

> what have i done to deserve this.

> ayesha

[Guest guest]

Ayesha,

You have done nothing " to deserve this " !

This is not a punishment from God. This is just a horrible thing that

can happen. Actually the more I learn about how a person's body

works, the more amazed I am that more things don't go wrong. There

are people who are bad who have good things happen to them and people

who are good who have bad things happen to them. I read a story once

that people's lives are like tapestries. We are so close and in the

picture that we can't see what the picture is. Out lives weave

through other peoples' lives to form the picture. We can't see why

our kids lives are so short and so hard. Some day we may see that

their sparkle brightened up our whole section of the picture and how

many changes they made because of the lives they touched.

I am very sorry for the child you lost.

I used to say I could not think of anything worse than a parent losing

a child. Now, I think that have a child suffering that you can't help

is worse.

Thinking of you and not knowing what to say to help.

Sorry,

Twana

> what have i done to deserve this.

> ayesha

[Guest guest]

First of all, you did nothing to deserve loosing a child. I strongly believe that God only gives you what you can handle. I cannot even imagine where you are, as I have never lost a child, but I'm sure you are a strong person. (Even though you may not feel so sometimes.) I also wonder sometimes why I had to have a sick child. I don't think it is fair, but I do believe that God has his plans. I have lived through many really hard times, wich made me even stronger to handle it when Grace started getting ill. Use your faith to help you heal from your loss, and use the strength it gave you to be ready for your new baby. Best wishes.

Rock, jazz, country, soul more. Find the music you love on MSN Music!