Finding The Silver Lining

John and I met almost 20 years ago at Geauga Lake where we both worked summer jobs during college. We dated for 3 years before marrying in 2000. Our first child, Lily, was born in 2007, followed in short order by Jack in 2009 and Ryan in 2011.

We were still trying to figure out life with three kids under the age of 4 when Ryan started having seizures at 8 months of age. The initial diagnosis was simply: epilepsy. We tried one anti-seizure medication after another after another. Ryan was hospitalized three times in as many months. We saw specialists and had countless tests. Finally, just after Ryan’s 2nd birthday, we were given the answer: CDKL5. Only about 1,400 children across the world have been diagnosed with CDKL5, and of those, only about 40 are boys. Our son Ryan is truly one in a million.

Along with seizures, CDKL5 causes many other medical challenges. Children with CDKL5 suffer from gastrointestinal problems, scoliosis cortical vision impairment and a host of other complications. It is a spectrum disorder and as such, there is no textbook case.

Early on John and I made the decision to focus on the positive, and people who know me know that I am always looking for the silver lining. Here is what I’ve found so far. We have easy access to the Cleveland Clinic Children’s Hospital, which provides phenomenal care for our kids. The International Foundation for CDKL5 Research is located in Wadsworth (unbelievably enough), and we are grateful for the hard work they are doing every day to find a cure. We are strengthened by the support and friendship we have found from other families of children with CDKL5 through social media platforms. And we are fortunate to be a part of A Kid Again.

A Kid Again gives our family the gift of time. Time together free from hospitals and therapies and appointments. Away from homework and housework and the mundane tasks that can preoccupy our daily life and time to enjoy each other and the company of families who are facing similar hurdles. And most importantly, time to create memories with our cherished family.

These memories give us something positive from which to draw strength in difficult times and to sustain us until the next Adventure!

On behalf of the Strok family, I’d like to thank the staff and volunteers of a Kid Again as well as all the donors and supporters of such a wonderful organization. Please accept our gratitude for what you have done and continue to do for our family, and for so many other families like ours. Thank you, for being a big part of our silver lining.

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