Victor's Best Friend & Spinal Muscular Atrophy - Spokane, North Idaho News & Weather KHQ.com

Victor's Best Friend & Spinal Muscular Atrophy

Nicholas and Victor together at 5 and 2 months old. Nicholas and Victor together at 5 and 2 months old.
Best Friends! Best Friends!

Nicholas' mother was a friend of mine from my hometown across the state.  Our families had been friends for as long as I can remember.  She and I were pregnant at the same time, even taking our giant, pregnant bellies to a dance club for a mutual friend's bachelorette party.  We joked that our boys (Nicholas and Victor) had their first party together that night.   After our sons were both born (hers in May of 2008, mine in August of 2008), we shared tales of mommy-hood and during a visit to my hometown, even got the boys together for a play date when they were 2 and 5 months old.  Nic was Vic's first pal. 

Recently, Nicholas was diagnosed with Spinal Muscular Atrophy (SMA).   I had never heard of SMA prior to Nicholas' diagnosis.  Jessica sent all of her family and friends links to information and to a petition for legislative funding toward a cure for SMA - and I thought that in the process of educating myself about Nicholas' disorder, I could pass that along through my Baby Blog, with the hopes that you might feel compelled to help my son's friend and his family by supporting SMA research, too.

SMA affects muscles throughout the body, although the muscles closest to the trunk (shoulders, hips and back) are often most severely affected. Weakness in the legs is generally greater than in the arms.  Babies with SMA often have difficulty sitting unsupported or cannot reach the crawling and standing milestones.  Sometimes feeding and swallowing can be affected.  Involvement of the respiratory muscles (breathing and coughing) can lead to an increased tendency for pneumonia and other lung problems.  

Spinal Muscular Atrophy is an inherited, autosomal recessive genetic disorder - it's also called a motor neuron disease.  Motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing.  Approximately 1 in 6000 babies are affected and about 1 in 40 people are genetic carriers.  Babies who have SMA inherit it from parents who are both carriers of the gene. People who are carriers may not know they are carriers until they have children diagnosed with SMA.  There are four types of SMA - at this time, Nicholas is most likely Types I and II, which tend to be the most severe. 

For the sake of Victor's friend and his family, I'm personally asking people to sign this petition (www.petitiontocuresma.com).  My hope is that by spreading the word and my interest in SMA, that Victor's friend, Nicholas, will be able to live the happiest, healthiest life possible.    He's a little boy who is already surrounded by loving family and friends who deserve recognition for their efforts in caring for this little angel!

Information about SMA provided by:

www.fsma.org

www.curesma.com

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