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The #1 Genetic Killer of Infants

Posted Mar 05 2009 4:43am 1 Comment
Even though I'm exhausted, I need to share this message that I received today from a dear friend. I had to read it several times before I was able to really register what it said.
"As you know, my sister and her partner had a baby girl this past October. Yesterday, after many, many tests, the baby was diagnosed withSpinal Muscular AtrophyType 1, SMA for short. Unfortunately, there's no cure and as the disease progresses it rapidly attacks the nerves, affecting her breathing and muscle development. As of now they have given her 3 months - 1 year. On top of this, because both my sister and her partner carry the gene that causes this, any children they have in the future will most likely be born with this as well. My family is strong and has handled stuff like this many times, but it's devastating. After they put in the feeding tube this week they will be able to bring her home where they will try to give her more love and comfort. There is hope...there's always hope. There is an experimental drug that can help hold off the progress while they research for a cure. She will be receiving this drug in hopes that they can find a cure."
My heart is breaking for the new mom and dad, grandparents, aunts, uncles, cousins, friends and community who have fallen in love with this precious little baby.

I'm grateful for the fact that my son is healthy, in every sense of the word. I'm glad that even though today was a rough day for the two of us, I was able to chase him on the playground, hold him when he cried, and sing him to sleep tonight.

When all is said and done, I need stories like these, unfortunately, to remind myself just how blessed I truly am, how strong mothers and fathers can be and how truly precious each and every one of our lives really are.
"Don't pray when it rains if you don't pray when the sun shines."
I was feeling helpless and sad when I read the email for the first time. Then I became angry and now, as I'm typing this, I'm near tears once again because it really is unfair that this disease affects so many families and why have I never heard of SMA until now?

I want to help. I want to give my friend more hope and pass something on to her family that perhaps can provide them with a little bit of faith as they deal with each day of this battle.

I'm donating money in this baby's name to both the SMA Foundation and Families of Spinal Muscular Atrophy. I challenge each and every one of you to do the same. You may not know of anyone who has had a child diagnosed with this disease, but it's the most common genetic cause of death in infants and there is no cure.

Happy Healthy Hip ParentingPeace Begins in the Home
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What is the name of this experimental medicine? As a parent of a child who was diagnosed with SMA yesterday I would be extremely grateful to learn it.
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