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

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

  1. lisalove

    lisalove Well-Known Member

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    I am just peeking over from 2nd tri and noticed this post and felt compelled to add my experience of this debilitating disease. Sorry this may be a long one...

    SMA is something which is very close to home. It is true, very few people have heard of it but it is more common than we realise. My BIL is living with SMA and he is one of the very LUCKY ones. His is type III, considered very mild. He is still living at home and is wheelchair bound. He has full mental function and is extremely intelligent, however his muscles are wasting away. He can just use the mouse these days and mainly uses voice activated software for his PC.

    He did have a full active life before he got really bad, so some children do survive into adulthood. He just had to use his chair and has a specially adapted house (lifts etc).

    The risks to my dh and I are more real than I can put into words. There is a 1 in 4 chance that IF I am a carrier of the defective gene that we will have a baby with SMA. We discussed it and decided that we didnt want to know if I was a carrier. We have had 2 children together so far, neither of which have SMA. #3 is on the way, so I do wonder if our luck will run out.

    My heart goes out to your friend and their family. I am so sorry, there is nothing that I can say or do to ease their pain and distress.
    :hugs:
     
  2. Sherileigh

    Sherileigh Well-Known Member

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  3. Tammi

    Tammi New Mommy

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    So sorry :cry::hugs:
     
  4. Dani33

    Dani33 Well-Known Member

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  5. Celine35

    Celine35 Lucy, aged 4 and 39wks

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    Never heard of this before, thanks for letting us all know.
    So sorry for your friend

    xxxxxxx
     
  6. Nutmeg

    Nutmeg Mum of 2

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    A girl i know on another board recently lost her baby to this too. They are currently trying to set up a new organisation called ACTSMA to help parents in a similar situation to your friends

    http://www.actsma.co.uk/

    Hope that might of some help to all and big ((hugs))
     
  7. Sherileigh

    Sherileigh Well-Known Member

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  8. kookie

    kookie pregnant with no 4

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    thats so sad sleep peacefully little georgia xx
     
  9. dizzy duck

    dizzy duck Mummy to Oliver

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    Aww hun, huge :hug:, Im so sorry for your friend, her family and you, it must have been so hard, you know where I am sweetie, I have signed the petition, thinking of you all, take care :hugs: XX
     
  10. Momy91

    Momy91 Guest

    Jeez, I dunno what to say.... It's awfull what they're going through right now. No one deserves this :cry:

    Rip little girl... You will be in my thoughts
     
  11. sezzlebum

    sezzlebum Guest

    thankyou for sharing this, i too like many others hadnt heard of this before and to be honest i think its amazing you had the strength to post this being close to the family.

    my thoughts are with little georgias family, i cant imagine what their going thru


    hugs
     
  12. LoraLoo

    LoraLoo Pregnant with a Rainbow

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    Im so sorry to hear this news. My thoughts are with Goergia's family at this sad time.
    Sleep tight sweetheart :hug: xxxxx
     
  13. Jem

    Jem Mummy of 2

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    I'm so sorry RIP little angel Georgia. You did the right thing in posting about this. People need to know as sad as it is. We never want to hear sad stories but unfortunately it happens. I know myself since being here a year now the sad stories you hear and it's really opened my eyes and for that I'm grateful x
     
  14. BVB

    BVB New Member

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    I'm so sorry about the baby. I know how it is with that disease I'm 16 and also have spinal muscular atrophy. There are lots of diseases that people do not know about. My friend passed away last year 2010 at age 28 she had limb-girdle disease (another type of muscular dystrophy). My sincere apologies and condolences to the family.
     
  15. luvnmybumpx4

    luvnmybumpx4 Mommy of 4

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    I am so sorry to hear this :( I had to go through a lot of testing with my 2 year old son just to rule out Cystic Fibrosis, thank God it was negative!! But I do pray for the strength of this family in this very sad time of loss. I do believe it is important for you and others to spread the awareness of this horrible killer. I have signed the petition as well!
     
  16. ghazal

    ghazal Well-Known Member

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    yeah SMA is very common now....i lost my daughter when she was of 7 months...she had SMA type 1.
    I have an indian friend whose 2 girls died with SMA......sad!
     
  17. Tiffa130

    Tiffa130 first time mom

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    I'm so sorry for the family's loss. Devastating .
     
  18. mumoffive

    mumoffive Well-Known Member

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    Thats so sad. I knew a boy who had batons disease and sadly passed on. Its a part of life but absolutely devastating. Im so sorry for your loss. xxxx
     
  19. staceyjc18

    staceyjc18 Well-Known Member

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  20. Mummy2006

    Mummy2006 Well-Known Member

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    My thoughts are with Georgias family she is safe in the arms of the angles now rip sweet heart xxxx
     

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