Seven-year-old Miller Queen loves to play soccer.
Watching him kick the ball around, you’d never know he lives with a severe form of epilepsy called Dravet syndrome.
The rare genetic condition causes terrible seizures and delays in development.
Miller’s seizures started when he was 6 months old. Sometimes 10 a day.
For the first few years of Miller’s life, he was in and out of the hospital.
“Daily life when you don’t have seizure control is just a rollercoaster,” said his mother Chelsea Queen. “You’re kind of always on edge waiting on the next seizure to happen.”
Every treatment they tried failed.
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Then, they met Dr. Scott Perry, medical director of neurology at Cook Children’s Medical Center in Fort Worth.
“When you deal with epilepsies that are so difficult to control, it certainly becomes difficult not to feel that there’s not an answer,” Perry said.
Only offered at a few hospitals nationwide, Perry and his team enrolled Miller in a clinical trial for the drug fenfluramine.
Once used as a dieting pill, the drug completely stopped Miller’s seizures.
He’s now doing things his family never thought possible – like playing sports and going to school – and celebrating three years seizure-free.
“The treatment completely changed his life,” Queen said. “He’s always been such a happy kid but now he’s able to experience life to the fullest.”
Perry said the clinical trial showed fenfluramine reduced seizures on average by about 70%.
Based on the research done at Cook Children’s over the last three years, the Federal Drug Administration approved the drug as a treatment for Dravet syndrome in June. Perry said the groundbreaking research would hopefully lead to more advancements in treating epilepsy.
“The next medication to try and make you seizure-free is probably 2%, but you know what, you might be that 2% so that’s why we keep looking for it,” Perry said.
Miller’s parents said his story is proof.
“If something doesn’t work, don’t lose hope,” said Miller’s father, Matt Queen.
November is Epilepsy Awareness Month.
According to the Epilepsy Foundation of North Texas, one in 26 people will develop epilepsy at some point in their lives.
To learn how to recognize, react and provide first aid to a person having a seizure, click here.
