Hi friends and family!
It's 2025 and Braxton is 17 years old. Life is good! Life is REALLY good right now. Let me back up a bit...
Things started getting rough mid 2023. Braxton was seizing every 2 weeks and having thousands of eye flutters a day. EMS was in our home atleast twice a month for 8-9 months. He went from having no seizures in school to eight seizures his last year in middle school. We were getting tired, concerned and frusterated. While discussing everything with a co-worker she suggested we talk to our Neuro about a newer drug that not many Dravet individuals were using but seemed to help several who had tried it. Just a few weeks later (March of 2024) we decided to take a leap of faith and add this new medication. We saw improvement almost immediately!
I'm thilled to let you all know that Braxton's last seizure was April 3, 2024. Yes, he's gone almost one year without having a seizure. This medication has changed his life. It's changed all of our lives. We are enjoying the seizure freedom while it lasts! Unfortunately, the seizures will come back and we will have to go back to the drawing board to decide what to do next.
DSF has made research a core priority, funding over $10.6 million of research efforts since 2009. Through the combined efforts of DSF, scientists, clinicians, industry, government, and patient families, research has led to advancements in the care and treatment of those living with Dravet syndrome. The foundation has funded over 70 research grants and awarded over $279K in patient assistance grants. Currently, there are two experimental therapies being tested in human clinical trials that target the genetic cause of Dravet syndrome. Additional approaches to overcome the genetic cause of Dravet syndrome are also in various stages of development. We can't stop now!
I'm asking you to once again
Give Up Your Cup (your coffee, your tea or other “cup”) for one day, one week, one month or anything in between during the month of March, and donate those funds to help Braxton and his Dravet friends have options.
Together, we can and will make life better for those living with Dravet syndrome.
Thank you for your continued support and generosity,
Misty, Ben, Braxton and Allie
