Harper's Dravet Journey

Harper, a five year old military child from Ohio, is courageously fighting a battle with Dravet Syndrome and needs our help. Harper had her first seizure at 3 1/2 months old. She had genetic testing done at 9 months and received the results right after her first birthday. She had the SCN1A mutation. It wasn't until she was 19 months old that her neurologist made the determination she indeed has Dravet Syndrome. Both of her parents (Eric and Jade) were tested and do not carry the mutation. Harper's Dravet results from a spontaneous mutation in the womb.

Dravet Syndrome is a rare, catastrophic form of Epilepsy that causes behavioral and developmental delays. 10-20% of children with Dravet are estimated to pass away before adulthood (mostly occurring before 10 years of age). There is no cure. Harper suffers hundreds of seizures a day; sometimes one seizure lasting 3 hours. She has miraculously survived thousands of seizures and severe allergic reactions to medications that were supposed to save her life. She’s been put through ridiculous amounts of IV attempts, unnecessary X-rays, medical testing, and pain. Due to the progression of Dravet, Harper’s medical treatment is constantly changing trying to find a combination that works to decrease the amount and severity of her seizures. To make matters worse, her rescue medication doesn’t work on all types of seizures and poses a threat to Harper being able to breathe.  

Harper’s parents have to fight for everything related to Harper’s health. They are fierce advocates towards doctors for medication scripts and/or information and towards insurance companies to pay what they state they will pay. They do absolutely anything and everything to give Harper the best chance at life. They spend hours a day at appointments, making appointments, in ambulances, at hospitals, on the phone with doctors and insurance companies all to make sure Harper survives. They are constantly communicating with other Dravet parents all over the world and learning everything they can. One of the many obstacles her parents overcome in order to care for Harper is yearly deployments. Both of her parents are in the Air Force Reserves but her father must volunteer for yearly deployments in order to qualify for TriCare coverage. While her father is deployed, her mother cares for Harper and Harper’s siblings completely alone, for months at a time. Despite having insurance coverage, Harper’s parents spend thousands of dollars a month ($1,000+) in out-of-pocket medical costs so Harper can have the medications she so desperately needs. This is a tremendous strain on Harper’s family. Donations will go directly to Harper’s family to help offset these medical costs.  

Every donation no matter the amount is appreciated. Harper is an amazing, intelligent, sensitive, and kind little girl who deserves the best chance at life. Harper’s family also believes in the power of prayer. Therefore, we graciously accept any support given in that way, too. Harper’s parents, Jade and Eric, are warriors who have risked their lives multiple times for our country and are now fighting to win the battle for their daughter’s life. We hope that you can help them help Harper during her courageous battle against Dravet Syndrome.


To follow Harper’s Dravet Journey, please see the link below:
Harpers Dravet Journey