This February Elliot turned 24! His first seizure was when he was 6 months old, and you would think after over 2 decades that he would be doing better. Unfortunately, while we are now comfortable with managing his seizures (he experiences 1-2 each week), other issues have become more difficult in daily life, particularly sleep and behavior.

Dravet syndrome is a rare disease and of the more than 10,000 known rare diseases, only a few hundred have safe, effective treatments. Our community is considered "lucky" to have 3 new treatments since 2018. Unfortunately these medications don't work for every patient and they are focused on seizure reduction and not the other health comorbidities that are a part of the constellation of symptoms that are a part of Dravet syndrome. We would love to have options available for Elliot that allowed him to have a happy and productive life. His behavior, along with poor sleep patterns, greatly limits what he can do each day and his world is small. 

We will keep fighting for better options for Elliot and for all of those living with Dravet syndrome. Please consider giving up your cup this March and making a donation that will help to support life-changing research. Or, you can still keep your coffee and just make a donation!

With love and appreciation of your support!

The Meskis Family