My second son has Dravet syndrome. He is 27 years old. We live in Japan. A local nonprofit, Pokkapoka Runners, matches participant runners with disabled individuals. Participants deepen their interactions with disabled people through training sessions, practice sessions, etc. Thanks to this activity, my second son is able to run.
When did Kiyonori’s seizures begin?
He had his first seizure after bathing when he was four months old. He had about 5 minutes of seizures when he had a fever. He began to repeat his seizures with the stimulation of light and figures, sometimes lasting up to 5 hours. At the age of four, he had myoclonic attacks 200 times a day and was diagnosed with Dravet syndrome. He was then genetically tested and found to be a truncation mutation.
What is your family’s hope for your future? For the Dravet community?
I hope that a curative drug for Dravet syndrome will be developed as soon as possible. I hope that clinical trials that are currently starting in the United States can be conducted in Japan as well. Since this trial is for patients up to the age of 18, we hope that a curative drug will be developed for patients over the age of 18.
What advice do you have for newly diagnosed families?
I tried eliminating possible factors each time he had a seizure, but that wasn’t good in terms of his development. Even if you have epilepsy, you should get to enjoy your childhood.