A request for the Mamas with SMA type II out there.

April 21, 2012

Hi!

My name is Tonya and I have posted on your this group many times over the

years, but with many different usernames. Gotta love how we grow up and our

usernames morph and change.

Anyway, my husband and I have been married for 2 years now and I have SMA

type II. Over the past while we been looking into getting pregnant and

everything that goes along with it. We've had many specialist appointments over

the last little while, with everything from my respirologist, Neurologist, GP,

geneticist, and a high risk pregnancy specialist [The high risk pregnancy

specialist was a horrible experience, to say the least. Let's just say they had

more concerns about my financial situation than they did in regards to my

pregnancy and disability. It was also quite apparent that he didn't think that

people with disabilities should be having children.]

Over these appointments we have discussed all of the risks concerning my

lung capacity and physical disability. All of my doctors have given my husband

and I the go-ahead, saying that at the progression point that I am at right

now, that if my husband and I want to have a baby, now is the best time to start

that process. They made us aware of everything from the fact that I might have

to be on bed rest for most of the pregnancy, to the fact that I may have to be

on bipap day and night for large portion as well. They've also told us that we

will probably have to be in the hospital for the last month, two, or more before

the birth. [this fact makes me so happy that I live in Canada, I don't know if

we would be able to afford it if we didn't.] As well as some of the more

scarier possibilities. Although we have heard of all the risks. We have been

very excited and have looked at all of the stories that we have read on here

with such hope.

We thought that we had finally gotten over all of our hurdles in regards to

our opportunity to have a baby. Recently we chose to tell some family of our

endeavor. This has not gone over very well... they are all very concerned for

my health and well-being, and are appearing to be unwilling to believe the

things our doctors have told us. They say they're worried that I'm " trying to

kill myself " . I know that they are concerned, and I respect and understand

their concerns, but my husband and I have done a lot of looking into this, and a

lot of soul-searching, and a lot of research, coming out on top of it all

knowing that we still want to do this. I am concerned that they are basing their

opinions on things that they were told when I was a child and growing up and

that technology, and the knowledge of SMA itself has changed so much.

What I am asking for from you, is if of you mamas out there could write me

about your experiences. I would like to be able to share them with my family, in

hopes of maybe helping them understand that having SMA and a baby is a

possibility. Even if your parents[ your babies grandparents] would be willing

to share their experiences and fears for you when you were going through this

and how they handled it that would be great to.

I'm just at such a loss, because telling the ones you love is supposed to be

a happy time, not a time of hurt feelings, strong words and heart break...

I look forward to hearing back from you all, and if you're not comfortable

posting your story here, just ask me for my e-mail and I will message it to you.

Thank you all so much for listening!

-Tonya

April 22, 2012

Hi Tonya,

I’m 41, SMA type 3, and I got pregnant, unexpectedly (this was not in the

agenda, as my husband has 3 kids from his first marriage and I was 41 we

agreed not having children, but karma is a different thing oooops!), by the

end of 2011. I’m on my 22 week. I live in South Florida, USA, relocated

myself just a year ago, so, by the time I got pregnant I had not even

medical insurance, due to my pre-existing condition insurance companies

didn’t want to accept me. The theme “coverage” was stressing, but I’ve

learned a lot with it, as well that one can reach a lot of support if one

searches.

To make it short, I could reach a temporary Medicaid, which covered the most

important tests at the beginning and will cover the baby’s delivery, and at

that time my husband also did his genetics. In the meantime, I applied for

the county medical assistance, which is covering now the rest of my

pregnancy. The first physician I met at high risk was pretty insane, he

directly suggested me to abort (it’s not worth to spend time mentioning more

about this guy and the rest of the story with him), but the rest had been

great. By the time I met the first one on high risk, due to his input I

contacted Dr. Bach, he told me I was going to be fine and gave me some

advices, not longer than a written line. 10 years ago I, also, asked Dr.

Bach about pregnancy on SMA women, his response was: “women body is created

to conceive”.

I take aspirins (pediatric ones) to prevent circulatory issues, anyway I’m

trying to reach the support of the county to get lovenox, which is what the

physicians suggest. The rest, I can tell I have felt fine; tests have done

well too… By the way, I met another physician at the high risk (because they

put you under a consultant one, but the delivery is another thing…) and now

we are dealing with him, and it has been much better!

About my family: My mother got a little concerned at the beginning, but now

she’s the most exited about it. Anyway, my husband and I rather to expect

after the 16 weeks to share the new with the rest, because it’s common the

women loose babies during the 3 first months. Also, because I know so many

women with stories about their complex pregnancies, and I am talking about

sport and healthy women, with no disabilities… so, discretion was fine,

then, well, it’s not easy to hide such belly jajajajaja ;-) so, we’ve let

things go through the most natural way as possible and trusting at all in

the circumstances.

It does not mean that I was not concern, neither I was mentally prepared!

But, well, this is the way life goes… so, I just accept everything the way

it comes and reach for practical and easy solutions asap. My father was a

twin, he was born in a small town, no physician, only a woman called

“matrona”, who did the deliveries, he was born at 7 months, with no

incubators available, not intensive therapy… I got a lot of these kinds of

stories, so, at the end, my only concern was the baby’s health, and it seems

to go fine, so, for sure I won’t make it up to the 39 weeks, but it doesn’t

worry me at all! – One thing I did was trying to cover all the possible

stages to happen and reach for the best way out to each one.

I am really impressed with all your research, congratulations! So, for sure,

I believe, you will make it very good!!! :-D

In internet used to be few stories available from SMA mothers, but I don’t

know if they still posted. It was more than 10 years ago when I read them.

I wish some of the content may be helpful for you :-)

Best wishes, blessings and regards,

Lee

_____

De: [mailto: ]

Enviado el: Domingo, 22 de Abril de 2012 01:18 p.m.

Para:

Asunto: Digest Number 3784

<;_ylc=X3oDMTJkMzlhNmd1BF9TAzk3MzU5N

zE1BGdycElkAzY4MTIxMDYEZ3Jwc3BJZAMxNzA1MDEzNDgxBHNlYwNoZHIEc2xrA2hwaARzdGltZ

QMxMzM1MTE1MDUx> SMA Spinal Muscular Atrophy

Messages In This Digest (1 Message)

1.

A request for the Mamas with SMA type II out there. From: tojo.cass@...

</messages;_ylc=X3oDMTJmcWJ2NmplBF9T

Azk3MzU5NzE1BGdycElkAzY4MTIxMDYEZ3Jwc3BJZAMxNzA1MDEzNDgxBHNlYwNkbXNnBHNsawNh

dHBjBHN0aW1lAzEzMzUxMTUwNTE-?xm=1 & m=p & tidx=1> View All Topics |

</post;_ylc=X3oDMTJmY2JnNTdiBF9TAzk3

MzU5NzE1BGdycElkAzY4MTIxMDYEZ3Jwc3BJZAMxNzA1MDEzNDgxBHNlYwNkbXNnBHNsawNudHBj

BHN0aW1lAzEzMzUxMTUwNTE-> Create New Topic

Message

1.

</message/31719;_ylc=X3oDMTJydmFwbGp

0BF9TAzk3MzU5NzE1BGdycElkAzY4MTIxMDYEZ3Jwc3BJZAMxNzA1MDEzNDgxBG1zZ0lkAzMxNzE

5BHNlYwNkbXNnBHNsawN2bXNnBHN0aW1lAzEzMzUxMTUwNTE-> A request for the Mamas

with SMA type II out there.

Posted by: " tojo.cass@... "

<mailto:tojo.cass@...?Subject=%20Re%3A%20A%20request%20for%20the%20Mama

s%20with%20SMA%20type%20II%20out%20there%2E> tojo.cass@...

<tojo.cass> tojo.cass

Sat Apr 21, 2012 5:54 pm (PDT)

Hi!

My name is Tonya and I have posted on your this group many times over the

years, but with many different usernames. Gotta love how we grow up and our

usernames morph and change.

Anyway, my husband and I have been married for 2 years now and I have SMA

type II. Over the past while we been looking into getting pregnant and

everything that goes along with it. We've had many specialist appointments

over the last little while, with everything from my respirologist,

Neurologist, GP, geneticist, and a high risk pregnancy specialist [The high

risk pregnancy specialist was a horrible experience, to say the least. Let's

just say they had more concerns about my financial situation than they did

in regards to my pregnancy and disability. It was also quite apparent that

he didn't think that people with disabilities should be having children.]

Over these appointments we have discussed all of the risks concerning my

lung capacity and physical disability. All of my doctors have given my

husband and I the go-ahead, saying that at the progression point that I am

at right now, that if my husband and I want to have a baby, now is the best

time to start that process. They made us aware of everything from the fact

that I might have to be on bed rest for most of the pregnancy, to the fact

that I may have to be on bipap day and night for large portion as well.

They've also told us that we will probably have to be in the hospital for

the last month, two, or more before the birth. [this fact makes me so happy

that I live in Canada, I don't know if we would be able to afford it if we

didn't.] As well as some of the more scarier possibilities. Although we have

heard of all the risks. We have been very excited and have looked at all of

the stories that we have read on here with such hope.

We thought that we had finally gotten over all of our hurdles in regards to

our opportunity to have a baby. Recently we chose to tell some family of our

endeavor. This has not gone over very well... they are all very concerned

for my health and well-being, and are appearing to be unwilling to believe

the things our doctors have told us. They say they're worried that I'm

" trying to kill myself " . I know that they are concerned, and I respect and

understand their concerns, but my husband and I have done a lot of looking

into this, and a lot of soul-searching, and a lot of research, coming out on

top of it all knowing that we still want to do this. I am concerned that

they are basing their opinions on things that they were told when I was a

child and growing up and that technology, and the knowledge of SMA itself

has changed so much.

What I am asking for from you, is if of you mamas out there could write me

about your experiences. I would like to be able to share them with my

family, in hopes of maybe helping them understand that having SMA and a baby

is a possibility. Even if your parents[ your babies grandparents] would be

willing to share their experiences and fears for you when you were going

through this and how they handled it that would be great to.

I'm just at such a loss, because telling the ones you love is supposed to be

a happy time, not a time of hurt feelings, strong words and heart break...

I look forward to hearing back from you all, and if you're not comfortable

posting your story here, just ask me for my e-mail and I will message it to

you. Thank you all so much for listening!

-Tonya

Back to top

<mailto:tojo.cass@...?Subject=Re%3A%20A%20request%20for%20the%20Mamas%2

0with%20SMA%20type%20II%20out%20there%2E> Reply to sender |

<mailto: ?Subject=%20Re%3A%20A%20request%20for%20th

e%20Mamas%20with%20SMA%20type%20II%20out%20there%2E> Reply to group |

</post;_ylc=X3oDMTJyYWl0ZWM0BF9TAzk3

MzU5NzE1BGdycElkAzY4MTIxMDYEZ3Jwc3BJZAMxNzA1MDEzNDgxBG1zZ0lkAzMxNzE5BHNlYwNk

bXNnBHNsawNycGx5BHN0aW1lAzEzMzUxMTUwNTE-?act=reply & messageNum=31719> Reply

via web post

</message/31719;_ylc=X3oDMTM3ODBtbGF

jBF9TAzk3MzU5NzE1BGdycElkAzY4MTIxMDYEZ3Jwc3BJZAMxNzA1MDEzNDgxBG1zZ0lkAzMxNzE

5BHNlYwNkbXNnBHNsawN2dHBjBHN0aW1lAzEzMzUxMTUwNTEEdHBjSWQDMzE3MTk-> Messages

in this topic (1)

Recent Activity

* 1

</members;_ylc=X3oDMTJmcmswbHVsBF9TA

zk3MzU5NzE1BGdycElkAzY4MTIxMDYEZ3Jwc3BJZAMxNzA1MDEzNDgxBHNlYwN2dGwEc2xrA3ZtY

nJzBHN0aW1lAzEzMzUxMTUwNTE-?o=6> New Members

<;_ylc=X3oDMTJlaDU3bWtpBF9TAzk3MzU5N

zE1BGdycElkAzY4MTIxMDYEZ3Jwc3BJZAMxNzA1MDEzNDgxBHNlYwN2dGwEc2xrA3ZnaHAEc3Rpb

WUDMTMzNTExNTA1MQ--> Visit Your Group

<http://global.ard./SIG=15l912l2j/M=493064.14543960.14365482.867457

8/D=groups/S=1705013481:NC/Y=/EXP=1335122252/L=0ba4254e-8c9f-11e1-a3b5-

77e0b42471f3/B=z_t_AkoGYsk-/J=1335115052150455/K=FKRHwUbGI8Ktwlp5bKptNw/A=57

58220/R=0/SIG=124m43uve/*http:/finance./group/BankofAmerica_

SmallBusiness/> Small Business Group

A community for

small business owners

Drive Traffic

<http://global.ard./SIG=15l6tjd68/M=493064.14543952.14365456.867457

8/D=groups/S=1705013481:NC/Y=/EXP=1335122252/L=0ba4254e-8c9f-11e1-a3b5-

77e0b42471f3/B=zvt_AkoGYsk-/J=1335115052150455/K=FKRHwUbGI8Ktwlp5bKptNw/A=40

25338/R=0/SIG=12jnci1fd/*http:/us.rd./evt=44092/*http:/searchmarket

ing./srch/index.php> Sponsored Search

can help increase

your site traffic.

<http://global.ard./SIG=15ljpl0uo/M=493064.14543957.14365470.867457

8/D=groups/S=1705013481:NC/Y=/EXP=1335122252/L=0ba4254e-8c9f-11e1-a3b5-

77e0b42471f3/B=0Pt_AkoGYsk-/J=1335115052150455/K=FKRHwUbGI8Ktwlp5bKptNw/A=55

22128/R=0/SIG=11kt0eu7c/*http:/advision.webevents./domoreforcats/>

Cat Owners Group

Join a community

for cat lovers

Need to Reply?

Click one of the " Reply " links to respond to a specific message in the Daily

Digest.

</post;_ylc=X3oDMTJldDI2dnQxBF9TAzk3

MzU5NzE1BGdycElkAzY4MTIxMDYEZ3Jwc3BJZAMxNzA1MDEzNDgxBHNlYwNmdHIEc2xrA250cGME

c3RpbWUDMTMzNTExNTA1MQ--> Create New Topic |

<;_ylc=X3oDMTJjZGZnZmhuBF9TAzk3MzU5N

zE1BGdycElkAzY4MTIxMDYEZ3Jwc3BJZAMxNzA1MDEzNDgxBHNlYwNmdHIEc2xrA2hwBHN0aW1lA

zEzMzUxMTUwNTE-> Visit Your Group on the Web

</messages;_ylc=X3oDMTJlczhvaW1xBF9T

Azk3MzU5NzE1BGdycElkAzY4MTIxMDYEZ3Jwc3BJZAMxNzA1MDEzNDgxBHNlYwNmdHIEc2xrA21z

Z3MEc3RpbWUDMTMzNTExNTA1MQ--> Messages |

</files;_ylc=X3oDMTJmNjdpNmJzBF9TAzk

3MzU5NzE1BGdycElkAzY4MTIxMDYEZ3Jwc3BJZAMxNzA1MDEzNDgxBHNlYwNmdHIEc2xrA2ZpbGV

zBHN0aW1lAzEzMzUxMTUwNTE-> Files |

</photos;_ylc=X3oDMTJlNzVwdG5zBF9TAz

k3MzU5NzE1BGdycElkAzY4MTIxMDYEZ3Jwc3BJZAMxNzA1MDEzNDgxBHNlYwNmdHIEc2xrA3Bob3

QEc3RpbWUDMTMzNTExNTA1MQ--> Photos |

</links;_ylc=X3oDMTJmMjgyMnY4BF9TAzk

3MzU5NzE1BGdycElkAzY4MTIxMDYEZ3Jwc3BJZAMxNzA1MDEzNDgxBHNlYwNmdHIEc2xrA2xpbmt

zBHN0aW1lAzEzMzUxMTUwNTE-> Links |

</database;_ylc=X3oDMTJjbDFtdGs4BF9T

Azk3MzU5NzE1BGdycElkAzY4MTIxMDYEZ3Jwc3BJZAMxNzA1MDEzNDgxBHNlYwNmdHIEc2xrA2Ri

BHN0aW1lAzEzMzUxMTUwNTE-> Database |

</polls;_ylc=X3oDMTJmOXE0c2htBF9TAzk

3MzU5NzE1BGdycElkAzY4MTIxMDYEZ3Jwc3BJZAMxNzA1MDEzNDgxBHNlYwNmdHIEc2xrA3BvbGx

zBHN0aW1lAzEzMzUxMTUwNTE-> Polls |

</members;_ylc=X3oDMTJlOXRodGluBF9TA

zk3MzU5NzE1BGdycElkAzY4MTIxMDYEZ3Jwc3BJZAMxNzA1MDEzNDgxBHNlYwNmdHIEc2xrA21ic

nMEc3RpbWUDMTMzNTExNTA1MQ--> Members |

</calendar;_ylc=X3oDMTJkMTNwdXY4BF9T

Azk3MzU5NzE1BGdycElkAzY4MTIxMDYEZ3Jwc3BJZAMxNzA1MDEzNDgxBHNlYwNmdHIEc2xrA2Nh

bARzdGltZQMxMzM1MTE1MDUx> Calendar

A FEW RULES

* The list members come from many backgrounds, ages and beliefs So all

members most be tolerant and respectful to all members.

* Some adult language and topics (like sexual health, swearing..) may

occur occasionally in emails. Over use of inappropriate language will

not be allowed. If your under 16 ask your parents/gaurdian before you

join the list.

* No SPAMMING or sending numerous emails unrelated to the topics of

spinal muscular atrophy, health, and the daily issues of the disabled.

Post message:

Subscribe: -subscribe

Unsubscribe: -unsubscribe

<;_ylc=X3oDMTJkZDZudXBhBF9TAzk3MzU5NzE1BGdycElkAzY4M

TIxMDYEZ3Jwc3BJZAMxNzA1MDEzNDgxBHNlYwNmdHIEc2xrA2dmcARzdGltZQMxMzM1MTE1MDUx>

</join;_ylc=X3oDMTJmdmFxOHRnBF9TAzk3

MzU5NzE1BGdycElkAzY4MTIxMDYEZ3Jwc3BJZAMxNzA1MDEzNDgxBHNlYwNmdHIEc2xrA3N0bmdz

BHN0aW1lAzEzMzUxMTUwNTE-> Change settings via the Web ( ID required)

Change settings via email:

<mailto:-normal ?subject=Email%20Delivery:%20Indivi

ual%20Email> Switch delivery to Individual |

<mailto:-traditional ?subject=Change%20Delivery%20F

ormat:%20Traditional> Switch format to Traditional

<;_ylc=X3oDMTJkOGMwMmxxBF9TAzk3MzU5N

zE1BGdycElkAzY4MTIxMDYEZ3Jwc3BJZAMxNzA1MDEzNDgxBHNlYwNmdHIEc2xrA2hwZgRzdGltZ

QMxMzM1MTE1MDUx> Visit Your Group | <>

Terms of Use |

<mailto:-unsubscribe ?subject=Unsubscribe>

Unsubscribe

<http://geo./serv?s=97359715/grpId=6812106/grpspId=1705013481/msgId

=3784/stime=1335115051/nc1=5758220/nc2=4025338/nc3=5522128>

April 23, 2012

Tonya,

Â

I don't have SMA, but my 12-year-old daughter, Anmei is type II/III.

Â

As a mom, I think I would be concerned and worried, but I would be extremly

happy for her too. Â Â Â Â

Â

But I think I would let her making the decision and trying my best supporting

her.Â

Â

OK.Â I don't think I can restrain myself totally from giving her some advices

(wanted or not), or nagging.Â

Â

Ping

Â

>________________________________

> From: " tojo.cass@... " <tojo.cass@...>

>

>Sent: Saturday, April 21, 2012 5:54 PM

>Subject: A request for the Mamas with SMA type II out there.

>

>Â

>

>Hi!

>

>My name is Tonya and I have posted on your this group many times over the

years, but with many different usernames. Gotta love how we grow up and our

usernames morph and change.

>

>Anyway, my husband and I have been married for 2 years now and I have SMA type

II. Over the past while we been looking into getting pregnant and everything

that goes along with it. We've had many specialist appointments over the last

little while, with everything from my respirologist, Neurologist, GP,

geneticist, and a high risk pregnancy specialist [The high risk pregnancy

specialist was a horrible experience, to say the least. Let's just say they had

more concerns about my financial situation than they did in regards to my

pregnancy and disability. It was also quite apparent that he didn't think that

people with disabilities should be having children.]

>

>Over these appointments we have discussed all of the risks concerning my lung

capacity and physical disability. All of my doctors have given my husband and I

the go-ahead, saying that at the progression point that I am at right now, that

if my husband and I want to have a baby, now is the best time to start that

process. They made us aware of everything from the fact that I might have to be

on bed rest for most of the pregnancy, to the fact that I may have to be on

bipap day and night for large portion as well. They've also told us that we

will probably have to be in the hospital for the last month, two, or more before

the birth. [this fact makes me so happy that I live in Canada, I don't know if

we would be able to afford it if we didn't.] As well as some of the more

scarier possibilities. Although we have heard of all the risks. We have been

very excited and have looked at all of the stories that we have read on here

with such hope.

>

>We thought that we had finally gotten over all of our hurdles in regards to our

opportunity to have a baby. Recently we chose to tell some family of our