Race Away Dravet

I still vividly remember when the Doctor came in room and said, Cooper has Dravet Syndrome.  He was about 1 ½ years old, and it was devastating news for our family.  Many people know our story, but it’s worth repeating for those that don’t.

When cooper was 7 months old, he had his first seizure that lasted about 30 minutes, and it sent us to the hospital.  At the time, the Doctors just told us to monitor him.  Cooper had several other long seizures, which landed him in ICU on life support.  During our 2nd ICU visit, we convinced the Doctors to do a genetic test to possibly identify any gene related conditions.  Thankfully we pushed for that.  It was identified that Cooper carried a variation to the gene SCN1a.  80% of people with Dravet carry this gene variant.  The Doctor told us that a parent may also carry the gene variation, so we both got tested.  It turned out that Whitney carried the exact gene variation.  To complicate the situation, Whitney was several months pregnant with our 2nd boy Colton.  The Docs said it was 50/50 if Colton would have the variation too.  When Colton was born, we got him tested immediately, and it turned out that he also carried the exact same gene variation.  That news felt like another punch to the gut.

 
On December 23, 2019, Colton was very sick with a flu, and he had a seizure that lasted approximately 1 hour, causing him to go into cardiac arrest.  Watching your 11 month old get defibrillated, and CPR performed, is the worst thing I have experienced.  We are very lucky that he didn’t die in that moment.  He was in ICU for 9 days, and in the hospital for a total of 30 days.  Our prayers were answered, and Colton has basically recovered from the trauma of that experience.  Life is not easy for these kids.  They are on daily medications, and require speech and physical therapy to keep up with their peers.
 
The reason for this post is not to get people to feel sorry for us.  Believe it or not, thus far, we are one of the fortunate stories in the Dravet community.  The one way I knew that I could help was to fundraise for the Dravet Syndrome Foundation.  DSF provides valuable research, education and material support for families navigating Dravet Syndrome.  
I wish I had the scientific knowhow to solve their issue, but I don’t.  The best way I know how to personally help is to fundraise.  I formed a race team called Race Away Dravet, and on May 23rd I will be competing in the Ironman 70.3 Chattanooga.  I am asking people to donate $1 for every mile I will be covering.  For those bad at math, that’s $70, haha. My goal is to raise $10,000 for DSF.  Your donation is tax deductible, and you will be providing great support for the Dravet community.

To better understand this condition, and the great work DSF does, check out their website www.dravetfoundation.org Thank you very much for supporting the cause. 

The Batt family