I am a member of a "Birth Club" on the baby center website. A few days ago I read a post about a lady who's baby was was thought to havehyptonia--which basically means poor muscle tone. The baby is almost like a rag doll and could slip through your hands when you pick them up. She asked for our prayers.
She just updated her post as they saw a neurologist and her baby has a very rare degenerative genetic disorder called Spinal Muscular Atrophy. In adults it's called Lou Gherigs' disease. He will not live longer than 10 months. I do not know this woman, but my heart goes out to her.
Please pray for a miracle, or at the very least, the strength to go through this horrific time.
I am so sad right now, he is such a beautiful little boy.
Mommies, when the baby's crying gets unbearable or the sleepless nights seem to go on forever, hug them a little tighter and thank God that the little "inconvienences" of early childhood do pass -- enjoy your children.
**EDIT---GOOD NEWS**
Our message board received a new update and there are drug options and treatments available to give her little boy a better quality of life and perhaps live longer. They are getting in touch with specialists in this disorder. Keep praying! Miracles do happen everyday!
About Me
- Sandy
- 30 years old and married to Shane. We have been blessed with our first child, Noah, born June 5, 2007. I love writing and have a sarcastic and humorous outlook on life...it's the only thing that keeps my sanity!
2 comments:
Sandy, I JUST came to your blog RIGHT after reading her post. It too makes me soo sad. I was crying and thinking how lucky I am. I was about to post something on my blog about how sad I was feeling after reading this, and instead thought I would come over to your blog in hopes you had posted a new confession that would make me laugh. As soon as I saw the title, I knew what you were going to be writing about.
All I know is I want to go kiss Maddie right now, but I am so afraid I will wake her. But, maybe just maybe it would be worth it. I am not just so sad that this women will soon be without her baby, I am so sad for the way he will go. Thinking of a baby not being able to eat and to leave the world in this way is unimaginable to me. It is totally not fair.
I can't even begin to imagine...
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