Ryan’s Prayer for a Cure

Ryan’s support system – Brother Spencer, Grandma Barbara, Mom Andrea, Ryan and Dad Jay
Ryan’s support system – Brother Spencer, Grandma Barbara, Mom Andrea, Ryan and Dad Jay

by Andrea Johnston

When I was asked to write this month’s blog, it was suggested I write from the heart. I’m Ryan’s mom, conveying his story and ours as we live alongside our loved one diagnosed with intractable epilepsy.

While in the third grade, Ryan had his first seizure on January 4, 2004, two months before his 9th birthday. He went from being an above-average student to one needing accommodations.

At the first doctor’s appointment, we were told his seizures would be difficult to control and unfortunately that proved to be the truth. What started out with him walking around in a daze has now, over almost 20 years, developed into tonic-clonic (grand mal) seizures.

Since his diagnosis, Ryan has been incredibly brave and the perfect patient for his doctors and myself. He never complains about the repetitive, ongoing tests he willingly endures, as we pray that one day he will be a candidate for brain surgery. In addition to the three seizure medications of 20 pills a day, he has had a Vagus Nerve Stimulator (VNS) surgically implanted. Still, the seizures are relentless and strike without warning, anywhere and anytime, averaging eight to 10 a month. He’s ridden in many ambulances, had stitches, black eyes, cuts, bruises, knocked holes in the drywall from falling, and slipped into Status Epilepticus once because the seizures wouldn’t stop. Amazingly he still remains hopeful!

Over the years, I’ve watched epilepsy change his personality, rob him of his childhood, friends, education, cognitive skills, memory, independence, the ability to drive, and live as a typical 28-year-old adult.

Epilepsy isn’t just seizures. There’s also anxiety, depression and medication side effects which have their own set of challenges. Our entire family is on the same roller-coaster ride.

Early on in this journey we heard about JoshProvides. After attending their first support group meeting, we left knowing we wouldn’t be alone on this road alone any longer. JoshProvides has generously provided us with an Embrace2 seizure watch, SAMi-3 sleep activity monitors, educational information, emotional support, and lifelong friends. And for that we are forever grateful. Thank you for all you have done for us and the epilepsy community. We couldn’t be epilepsy warriors without you all.

Ryan is my hero and the strongest person I know because of all he’s been through and continues to endure. I will always be his biggest cheerleader and will continue to pray for his miracle.