Sad news...SMA (not my baby...a friends)..**Updated**

Discussion in 'Pregnancy - Third Trimester' started by Sherileigh, Apr 8, 2009.

  1. Sherileigh

    Sherileigh Well-Known Member

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    I'm not sure why I'm telling everyone...I guess because people need to know about this horrific disease. It's called Spinal Muscular Atrophy. A friend of my sister/niece and someone I've come to know over the last year, has 3 children, one of them was 6 months old on monday. About a month ago they took her to the doctor as she wasn't able to do what other babies could...she couldn't lift her head, had a very weak cry, very limp body. They started running some tests and in the meantime she got pneumonia. She was hospitalized for 2 weeks, on a respirator. They got the results last week that she does have SMA, and it's fatal. They've told the family that she's only got 1-2 weeks to live. They took her home last friday...and had a big 6 month birthday party for her on monday. I'm not trying to make anyone sad, just want to share her story. The mother's request today to all her friends was to share this knowledge. As knowledge is power. Sadly SMA is the #1 genetic killer among children under 2 and I as most of us I'm sure had never even heard of it. She said the researchers are still so far away from any tests even being conducted on human beings. Both parents must carry the gene and give it to their children (like Cystic Fibrosis) and then they have a 25% chance of getting it.
    This has really hit me over the last couple of weeks, a lot of tears have been shed..as sometimes life just seems so cruel. Then I feel my baby kick and I think, I should be happy right now and I am most of the time. Just feel so sad for this wonderful family.

    **Update**
    Sadly sweet angel Georgia passed away last tuesday. I went to her funeral today and let me say it was the saddest thing I've ever done. Her parents are beyond strong. The service was beautiful and perfect. And at the end all the little girls there released balloons into the sky for Georgia.....
    If anyone has sometime, please sign this petition to help cure SMA...this is Georgia's mothers only wish right now...to fight this disease!
    http://www.thepetitionsite.com/182/petition-to-cure-SMA
    Thanks.
     
  2. Sherileigh

    Sherileigh Well-Known Member

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    Not a word...hmmm :shrug:
     
  3. Jkelmum

    Jkelmum Well-Known Member

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    :hugs: There isnt anything I can think to say maybe theres a lot like me
     
  4. Sherileigh

    Sherileigh Well-Known Member

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    I guess I probably shouldn't have posted this...is there anyway to delete? Was just trying to get some support for what I was feeling. But possibly not the place.
    Thanks Serina27.
     
  5. Missy85

    Missy85 Well-Known Member

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    AWW hun! thats awful news for that family... unfortunatley we all need to be aware of such diseases, hard part of life... Big hugs to you and my thoughts are with the family..
     
  6. Jkelmum

    Jkelmum Well-Known Member

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    Thats not what i meant and which is why i didnt reply straight away ...i just didnt know what to say hence why :hugs: I wasnt sayyin u shouldnt of posted ...
     
  7. Emsy26

    Emsy26 Mum of 4 & Wife-To-Be xx

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    I agree with Serina, it's not easy to thnk of words to say in this situation.
    Thankyou for letting us know about this dreadful disease, I'd never heard of it. So Thankyou xox
    My thoughts go out to your friend and her loved ones xox
     
  8. staceymy

    staceymy Mummy To Two Princesses

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    Ive never heard of this disease. Thanks for letting us know. My thoughts are with the family. I cant imagine what they are going through.
     
  9. Sherileigh

    Sherileigh Well-Known Member

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    I didn't mean that in a negative way, just thought maybe this was too sensitive of a topic to put here...that's all. I wasn't sure if people wanted to read about this kind of thing as it's very scary.
     
  10. Emsy26

    Emsy26 Mum of 4 & Wife-To-Be xx

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    It may be scary but it's also good to be aware of all different types of dangers xox
     
  11. Laura85

    Laura85 Mummy to 1 & Expecting!!

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    What horrible news, I feel for you and your friends family.

    I didn't know about the disease, but i will be doing some research on it now. thank you for bringing it to my attention.

    It is a horrible thing to happen and it is difficult to console as a child is so precious. I hope you can find some consolation within your own baby.

    My thoughts and wishes go out to your friends.

    God bless. xx
     
  12. DolceBella

    DolceBella Mum of 2 Gingers!!

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    So sad... My thoughts and prayers are with them. :hug:
     
  13. LoraLoo

    LoraLoo Pregnant with a Rainbow

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    Im so sorry to hear that:cry: my thoughts are with them all at this sad time.

    And i think you did the right thing posting, people SHOULD be aware. I often feel I shouldnt post about Eve because it scared people, but truth is, it DOES happen, people thinking its not going to happen to them or turning a blind eye isnt going to stop it happening.

    Its also quite hurtful when people say they dont know what to say, sometimes an 'Im sorry' is all it takes.....

    Lora xxxxx
     
  14. Mummy&bump

    Mummy&bump Well-Known Member

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    o my! thats something iv never heard of! you and all ur family/friends must be going through hell at the moment, just enjoy what time you all have left with wee one! its so sad when things like that happen!

    i think you done the right thing posting to hun, if you hadnt id prob never have been aware of it and after all were all sopposed 2 b here to help n support eachother!

    my thoughts are with uz hunni

    xx
     
  15. Dukechick

    Dukechick Wife & proud Mom of 2

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    Oh, the poor thing. So sad. I'm getting a little teary eyed from reading this. I hope your friend is able to stay strong, and same for you :( It's so frustrating when things like this happen to ANYONE, let alone babies.
    Take care, and I hope your friend's family stays together and strong.
     
  16. MummyMummy

    MummyMummy Well-Known Member

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    i think the lack of posts is because we are ignorant when pregnant, ignorance i blissisn't it?

    i'm really sorry to hear what your friend is havingto go for. again, my ignorance is that once you have your baby and all scans areclear then that's it then... everything is perfect for forever. i have never heard of this before. it's so sad that she wont from what you said have her first baby, so so unfair :( i can't imagine whatthat family is thinking/going through right now:(

    xXx
     
  17. dizzy duck

    dizzy duck Mummy to Oliver

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    Thank you for this post hun, Its important to know about diseases like this. I have never heard of it before either. My thoughts and prayers are with you and your friends and family. Take care :hugs: XX
     
  18. soon2b6

    soon2b6 Mum to 6

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    Im so sorry to hear this terrible news, everthing makes me cry atm so you can imagine...
    I had not heard about this condition either, what a cruel blow for the family.
    Were there any other clues to this before hospitalisation with pneumonia?
    I hope the party is as happy as it can be and they get some happy memories to keep forever.
     
  19. lillysmum

    lillysmum Mum of 2 cheeky monkeys

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    thats awful, such a tragic thing to happen so young. I've never heard of SMA personally so this has been very informative for me, like you say knowledge is a very powerful thing.

    Hugs to you hun and your friend who is going through this sad sad time.
     
  20. 2nd time mum

    2nd time mum Well-Known Member

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    I have never heard of this. That is awful. Thoughts go out to the family at this horrible time xx
     

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