Illinois Child With Rare Disease

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For many parents, dealing with a sick child is a trying experience and no matter how serious, parents want their child to get well.

In rural Illinois, a little boy has a rare form of epilepsy.   It’s so unique, that only 160 people in the world are known to have it.  It’s a situation that requires 24 hour attention and nearly two dozen pills a day.

Clayton Gard looks like a normal, healthy little boy.  But the 19 month old is facing a disease that was only identified a few years ago and in many cases, those with the disease do not make it to adulthood.

Clayton has sodium channel neuropathy or SCN8A.   It’s a genetic mutation impacting the brain causing  life threatening seizures that stop breathing.   During the initial treatment for seizures doctors were baffled and were not optimistic about his future.

His father Jacob said, ” I remember him coming in saying we have one thing left tro try and after that ..it’s just make him comfortable and send him home and wait it out.”  

Eventually doctors prescribed a special anti-seizure medicine that works.  He’s gone three months without a seizure.  But the treatment comes with a price.

Clayton has to be watched constantly and he takes over 20  pills per day.  In addition, because of the medication  his brain activity is slowed and the disease also impacts his heart.  Plus, there’s a chance he won’t develop the ability to speak.

Still, his parents have hope.

Clayton’s mom Megan say, “we celebrate everyday that he is as good as he is but you always wonder every time he has one, is he going to com back to us or not?”

Clayton’s cute little sister, Cassie, does not have the disease.  The parents are also negative for the genetic mutation.  They say the disease is very random and doctors say it could happen to anyone.

Ultimately, they hope Clayton can live a normal, healthy life.  They also hope for more awareness of SCN8A, so that more research is done and more lives can be saved.

For a direct link to Clayton’s Facebook page, click here

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