My Story
(Written by Mommy)

Makenna was born a healthy 7 pound 8 ounces on November 3, 2009. She was perfect. She was exactly what we had wished for. She was amazingly calm and didnít squirm all over when we would change her diaper like other babies I saw. I even boasted about her calm demeanor.  But around 2 months old a friend noticed that she didnít put weight on her legs. Our family doctor confirmed that her legs were not doing what they should be at that age. At 4 months the neurologist at the University of Michigan told us she most likely had Spinal Muscular Atrophy.  After a long 5 hour drive home, I got on the computer and looked up Spinal Muscular Atrophy. The first (and only) thing I read was that 90% of children die by age 2. There are no words that can possibly describe the feeling that you get when your told you baby is going to die.

I had just transitioned Makenna from the bassinette to her crib in her own room days before. That night I put her back in the bassinette next to my bed. All I can remember from that night was crying and praying that she didnít have SMA and that the doctors were wrong. The next day I read more of what SMA was and it only confirmed that she indeed had the mutated gene causing her tiny body to fail. That day I took apart her crib and put it in our bedroom.  And at 2 Ĺ years old that is where she sleeps now, in a bed next to ours.