How we started
My son, Kiyonori (Kiyokun) has been suffering from Dravet Syndrome. He has experienced his first outbreak of convulsion. After that, he has frequent fit for 2 to 3 hours just by seeing sunshine filtering through foliage or stripe patterns. This happens 5-6 times in a hour when he has a fever. We also have had number of respiratory arrests. When he was 4 years old, he experienced encephalopathy and his ability went back to the one for a baby. He has started everything from sitting by himself, however, he has survived and he is now a young-adult of 24 years old.
When Kiyonori started to attend 1st grade (2004), we have set up a “Kiyokun Fund” (Association for research on Dravet Sundrome). We have organized a series of events, such as charity concerts, recitations, musicals to enlighten the issues around epilepsy. These programs are also for fundraising for medical research on the syndrome. The 2nd charity concert was held in Carifornia and was covered by media such as West Country Times ofr Nichibei Times.
Kiyonori entered to a high school for handicapped and started to run marathon. He join in the marathon competition in the school for short-track (1.5km) and won the first prize, on the contrary to our wish to complete the race even by walking. We were so delighted to see his proudly smiling face to know he found something he can bright up himself even with severe handicap.
In 2012, when he was 17 years old, we understood that he need to live with wheelchair when he got adult. The reason is unclear but we know this is due to longer longevity of the people with Drevet Syndrome which used to live shorter life.
In the process of participating in marathon races, we have realized that there are few handicapped marathon runners. It is more known about accompanying runner for the people with visual disturbance, however, the other types of accompanying runner, such as for intellectually or physically handicapped are not well known.
This is how we have started “Pokkapoka Runners” which match all the handicapped runners with accompanying runners so that all the people with different handicap can participate in various marathon races.
Yuko Arimori, an Olympic athlete, Nami Takeuchi, the president of Prop Station, Kanpei Hazama and other people have joined us to start “Pokkapoka Runners” on 1st Oct of 2013 and we have become certified non-profit in September 2016. We have been aiming at increased welfare and social participation of handicapped as well as improved health and independence.
NPO Pokkapokarunners Yuko Hayashi
