I have been crying since six o'clock this morning after seeing this on the news while pumping. This sweet, sweet five month old little girl was recently diagnosed with a rare genetic disorder called Spinal Muscular Atrophy, or SMA for short. It is the #1 genetic killer of infants under the age of 2, yet most have never heard of it. There is no cure at this time, and is not included in pre-genetic screening...although most insurance plans allow for the OPTION of testing for it. It is physically debilitating and attacks the muscles eventually causing respiratory failure, leaving cognitive skills intact. She was given eighteen months to live and her awesome parents have chosen to create a bucket list of things for Avery to do before her time is up. Her list includes everything from her first kiss, to visiting a college campus. So sweet...and an unbelievable story!
Please go follow along on her short journey and help to spread the word about SMA! Most of us are so unbelievably lucky...I must go love on my sweet boys and savor every second with them. God bless this sweet baby and her family.
3 comments:
i addded her blog to my blogroll last week or so, and her story completely breaks my heart. i also cant imagine how her dad writes these hilarious posts- her parents must be going through such turmoil over their little girl but somehow they find a way to make the blog "from her point of view" so cute and funny!!
How horrible for an infant to be given a death sentence like that. Its so sad that we can't find a cure or a preventive measure to fix more issues during gestation.
So very sad. My husband is a nurse who specializes in SMA, it's very sad...thanks for posting!
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