Easton Clay Tyre

As some of you may know Easton suffers from a rare genetic disorder SCN2A that causes infantile seizures. Easton is 8 months old and has had seizures since he was 2 days old. There was one time when he was having over 200 seizures a day.  He is currently on 5 different seizure medications and still has anywhere between 5-80 seizures daily!! He has tried a total of 8 seizure medications and the one that worked best for his seizures caused him to become really sick and we had to stop using it. 

We are currently trying to get a medication from France called Stiripentol that insurance will not cover. This medication is known to work with his diagnosis but is a bit costly. It's roughly around $1750 every 3 months. 

I'm sure some of you are thinking why not try something that insurance will cover? The issue with that is with him being under 2 there aren't many other options for him at this point. We are truly hurt and tired of seeing him suffer daily. We want him to have as normal of life he possibly can and this medication just might help with that! We are asking for any help we can get to help pay for this medication for at least the first 3 months. We appreciate any help we can get. If you have any questions feel free to ask! Thank you in advance! --Alicia Tyre (Easton's mom)