The pandemic has been hard on everyone without a doubt, but for a family with a medically compromised member, the risks are even higher. Ryan and his family loved the dance party with Slider and the virtual visit to the Aquarium. The fun events provided by A Kid Again were something they really looked forward to and talked about long after. The kids also especially loved the Soap Box Derby Adventure in a box – crafts have always been a huge favorite of the kids and they loved creating and racing their own cars!
The Adventures are amazing for Ryan and his siblings. It means a day of pure, uninterrupted family time. The family does not have to worry about their to-do list or medical appointments or anything other than just having fun! Their favorite Adventure is Cedar Point every year, they are thrill seekers and love roller coasters!
Ryan was diagnosed with CDKL5 Deficiency Disorder, which for him manifests in seizures, apraxia of speech, cortical vision impairment and development delays. The seizures can be difficult to control and in his 9 years of life, they have tried at least a dozen different medications and treatments to help them. Some work better than others but none have stopped the seizures completely. Ryan is nonverbal, so all interactions with him are nothing more than a guessing game. His parents, Megan and John, have learned to interpret his vocalizations and body language for basic needs but, they do not know what his favorite color is or who his favorite superhero is.
The Adventures are some of the Strok’s happiest memories, and for a family who is constantly worried about a child whose life expectancy is shorter than most, these kinds of memories are even more precious. Megan and John say they have learned not to take a single moment for granted. It is a blessing for them to not to have to think about any plans or arrangements for these fun outings. All they have to do is pack a bag and show up!
In a lot of ways, this family is dealing with the same things everyone else is dealing with. Raising 3 kids between the ages of 9 and 13, while trying to navigate work and school at home simultaneously is not an easy task. It was hard for Megan and John to explain to the kids what was happening and what to expect. They have always encouraged the kids to look for the silver lining in every situation, and this pandemic is different. They have had all kinds of time to have fun together – getting outside as much as possible, trying out new recipes, writing letters to family members and doing crafts.
Ryan’s parents say that A Kid Again Adventures have given their family two incredibly important gifts: the gift of community and the gift of memories. It is easy to feel isolated when you’re caring for a child with a complex medical diagnosis. The family’s life often becomes so focused on the necessary tasks of getting from day to day that planning a family fun day can feel like an added chore, to say nothing of the financial commitment. They have become friends with other A Kid Again families and look forward to seeing them at Adventures to catch up as much as they look forward to the Adventure itself. They have a large and growing bank of Adventure memories that they can always look back on with smiles. Ryan and his family have gotten to experience events that they might never have attended otherwise, like the Soap Box Derby!