The multiple hospital stays took their toll on little Ryan, whose family was constantly being separated by Katelynn’s medical needs. “Ryan was 4 or 5 at the height of Katelynn’s hospital stays. He often stayed with his grandparents, who have been instrumental in helping us get through all of this. “I was little and I wanted my parents,” Ryan says. “Sometimes I was at my grandparents for a month and I was always scared that my sister was going to die.” One thing that helps Ryan is a club called “Sibling Shops”, where siblings to kids with disabilities come for 2-3 hours at a time and play games, eat and talk about hardships. “You can talk about things that are bottled up inside. You can talk about anger or about other people who think we have it just as easy as they do.
At one point, the family experienced a period of relative calm and peace. Her treatments started providing Katelynn with total seizure control. Katelynn also qualified to work intensely with physical therapists in order to gain skills she had never before been able to master due to the interference of seizures. “For the first time,” explains Gary, “she was sipping from a straw, holding her own bottle, eating more solid foods. She was even sitting up for periods of twenty minutes at a time, unattended!”
Unfortunately, one week into this seemingly miraculous period, Katelynn went into status epilepticus—she started having violent seizures, one on top of another that wouldn’t let up. Katelynn needed medical intervention urgently and Gary made a decision to drive straight to the ER where he had recently learned about an excellent doctor from another family who had a kid with CDKL5. “I drove in my truck literally as fast I could drive. Katelynn was seizing over and over the entire time. It was the absolute worst because we didn’t know if we would ever bring her home.” Once in the hands of medical care, Katelynn was put into a coma twice to stop the seizures. The doctor wanted to perform a tracheotomy, but Kathy and Gary refused. They insisted would she pull through without one. “She’s a tough girl,” Gary said. “She can handle it.”
Katelynn survived, but all the progress she had made with her physical therapists was lost. She was never able to regain any of the skills like sitting up and holding her bottle. “The physical therapists made us a video, though, of her progress. “It’s hard,” Kathy chimes in, “to remember what she could do. Like even now, she’s in a period of many seizures so she’s not even able to smile. She hasn’t smiled in three weeks. Usually she smiles all the time. That’s what she’s known for!”
Despite the immense challenges the family has faced with Katelynn’s illness, there is joy and love in every corner of every room in the house. They laugh together at the photographs of Katelynn in her elaborate, handmade Halloween costumes. Excitedly, they speak of their Make-A-Wish trip to Disney World, where Katelynn was able to enjoy two days at a park that was set up for kids in wheelchairs and in need of medical care. Kathy and Gary are proud of Katelynn’s experiences at school, which she attends full days from 8-3. When not having seizures, she has been having consistent success with a device called Toby, which is helping her to communicate through movements of her eyes.
A high-pitched cry comes from Katelynn’s room. She has woken up from her sleep and Gary carries her into the living room. “Hi Sweetie!” says Kathy. Gary places her gently on Kathy’s lap and the family settles into the couch with ease and comfort in their affection for each other. “She’s a great cuddler,” says Kathy, wrapping her arms around Katelynn. “Ryan likes to cuddle her so much that sometimes if you take her away from him, he’ll protest saying, ‘But I just got her!’” Ryan laughs at this idea and reaches for Katelynn’s hand. “She can feel that I am here,” he says. “Even if she can’t talk or walk. She knows that I am here and that is all that matters.”