SCRANTON, Pa. — A 5-year-old boy from Lackawanna County is living with a rare form of epilepsy and his parents are ready to find a cure. Because of how rare it is, there is very little awareness, and even less money being raised and going towards research. The Hill family from Roaring Brook Township is bringing the first-ever Dravet Syndrome Foundation fundraiser to Scranton this weekend.
Cael Hill is in week three of kindergarten at Moscow Elementary Center. He is excited to turn 6 in November, but when he was just four months old, he had his first seizure. Then, when he was 8 months old, he had his first prolonged seizure.
"He had to be life flighted to Children's Hospital of Philadalephia and it was there that because of how his seizures at presented, that they suspected Dravet syndrome," said Reagan Hill, Cael's mom.
Dravet Syndrome is a rare, severe, and lifelong form of epilepsy. It affects about 1 in 16,000. Since his diagnosis and under the care of some of the best doctors in the country specializing in Dravet, Cael is now on a very strict ketogenic diet.
"It's definitely making a big difference in terms of his seizure frequency, and we've also found a rescue medication that works well for him," said Reagan.
Not only are Cael's seizures less frequent, but so are trips to the emergency room, although Cael's parents say talking about that is kind of like talking about throwing a no-hitter—they try not to do it.
"It's been a long journey, but his health is in a much different place now than it was at the beginning of our journey, so I think now we feel like, we had always dreamed of having a fundraiser like this, but now we feel like we have the time to devote towards putting something together," Reagan said.
So, the Hills are ready to share their story and make a difference. This Sunday, September 15, at McDade Park in Scranton, they will be hosting Steps Toward a Cure, a 5k and 1-mile walk raising money for the Dravet Syndrome Foundation. EJ, the DJ, will be there, and there will be food, games, and raffle baskets for the whole family. Registration starts at 9 a.m., and the race starts at 10.
"Cael is our only child, and we love him to death, and we would do anything for him. I think we're just trying to be the best parents we can be," said Matt Hill, Cael's dad.
There are now ten Steps Toward a Cure fundraisers around the country raising money for the Dravet Syndrome Foundation. The Hill family is proud to bring the first one to the Scranton area this year. Through planning it, they were able to connect with another Scranton family on social media. Their son is Cael's age; he also has Dravet Syndrome. They will be meeting in person at the race this weekend.
You can register for Steps Toward a Cure by clicking HERE.