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

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.

 

So sorry

 

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

xxxxxxx

 

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))

 

thats so sad sleep peacefully little georgia xx

 

Aww hun, huge , 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 XX

 

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

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

 

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

 

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

 

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

 

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.

 

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!

 

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!

 

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

 

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

 

xx

 

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