John H.

Condition: Severe Epilepsy, Autism
City, State: Beaverton, OR
Club: Battle Ground High School Sparrow Club Service Hours:
Date Adopted: 12/23/2013

John's Story:
John is a happy and active 11 year old, despite suffering through 9 years of debilitating seizures.
His ordeal started just before his 2nd birthday when he suddenly started seizing. The seizures have changed through the years, but he still seizes almost every day and these seizures have completely stopped any chance for him to learn. He regressed at first and has remained at a one year old mental level since that time.

John is non-verbal, can’t dress or bathe himself, and doesn't understand basic safety precautions (like heights or busy roads).

John’s parents have tried everything to help him - 13 different strong medications, a special high-fat diet, a zero carb diet, and dairy free and gluten free diets. They’ve tried Chinese herbs. They’ve tried homeopathy. John had a device (Vagus Nerve Stimulator) inserted in to his chest that gives his vagus nerve a mild shock every 2 minutes. Despite all of this, John continues to have lots and lots of seizures.

Throughout all of this, John has remained a super happy and energetic boy. He is full of life and it is hard not to be inspired by his resiliency. To look at him, you would never know the challenges he faces. He can suffer 20 seizures in one day, sleep them off and wake up the happiest guy around. He has taught his family to really appreciate the good times and not dwell on the bad.

John has an unending supply of energy, and his family struggles to find ways for him to release it in a safe manner. They installed a climbing wall in their living room, they have a swing in their dining room, and they get outside as much as they can. John’s dad has run many, many miles pushing John in a stroller. But safety is a real concern.
John has escaped his house and ran in to the intersection down the street. He has climbed onto the roof several times. He has fallen from the top of a playground structure and been knocked unconscious. He sliced open his side from trying to climb on a glass picture that subsequently shattered. John’s family fears for his safety.

John’s dad, an avid cyclist, hopes that a tandem bicycle might be the perfect way for them to get outside, expend some energy, and enjoy some time together. They were able to do a few rides on a traditional tandem and John loved it! However, that too was

dangerous - a big seizure could have been disastrous. They gave up on riding altogether until the family stumbled across a bike that was seemingly made for John. This bike allows John to ride in a bucket seat in FRONT of the adult, where he can be closely watched. His family tracked one down locally and was able to test ride it. It was perfect. It’s safe, stable, but still fast enough that they can go out and do weekend charity group rides. The family will use any Sparrow funds raised by Battle Ground High School to help offset the purchase of this bike.




Club is School Sponsored
Club is School Sponsored