Hey, I'm Cfmommy!

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Sunday, June 01, 2008

One of the baby's on Kennedys floor

Has this...

http://www.answers.com/topic/spinal-muscular-atrophy?cat=health

"SMA" and its not good :( A normal healthy baby...little girl..and now with a life expendancy of 4 years old :o( I see mom every day a few times a day, and I just want to hug her...I can't imagine...

To think that CF'ers use to live to be only preschooled age...how far we have come..

I feel so so sad for this mom...

4 comments:

Mary said...

With proper intervention, many of our Type 1 SMA children are living much longer. My daughter is 3 1/2 and all in all is doing well. Please feel free to share with her my information. We can be reached at: www.our-sma-angels.com/jenna
~Mary

Cfmommy said...

Wow, thats amazing that you are here!!!!! Weird~

I will totally pass it along. Mom and grandma are not coping well, of course!

Thanks so much!

How did you find my blog though???

Jane said...

See how great the blogging world is Tara - just by posting about it you've made a great connection :)

Please pass my best wishes on to the family at the Stollery!

Mary said...

Please give the mom and grandma my website and they can reach me by email from the home page. I also know of some families in Canada that maybe can help too. Take care!