UH Rainbow Provides Personalized Care

Kylin Nixon had his first seizure when he was four months old. Then another two months later. And another soon after that. Kylin was diagnosed with Dravet syndrome, a rare and catastrophic form of epilepsy that causes frequent and prolonged seizures. Soon, he was enduring two seizures a month.

“When Kylin has a seizure, it doesn’t stop,” explained his mom, Sarah. “We have to go to the emergency room every time he seizes so that they can medically stop it. He’s usually intubated and, three times, they’ve had to revive him using CPR. With each seizure, there is always a developmental setback and the worry that he won’t bounce back. Each and every time, it’s terrifying.”

Last year, Kylin had a seizure unlike any before. He spent 52 days at UH Rainbow Babies & Children’s Hospital followed by months of rehab. His physicians weren’t sure if he would fully recover the ability to walk or talk. “My biggest fear was always that he would have a seizure so bad that it would change him,” shared Sarah. “Last year, that’s exactly what happened and it crushed me.”

Thanks to the personalized care at UH Rainbow, Kylin fully recovered and is now one-year seizure free. All of this was made possible by the collaborative efforts of his specialty care team, which includes providers in neurology, gastroenterology, speech and occupational therapy, and more. His appointments range in location, from Cleveland to Parma, Westlake to Solon. For his family, who lives in Lorain, the travel alone can be exhausting.

“His appointments are all over the map, but he gets awesome care,” emphasized Sarah, who no longer works to ensure Kylin has the around-the-clock-care he needs. “From the beginning, Rainbow has been amazing. When you’re there, you know your child matters. I thank God for Rainbow.”

The new Zagara Pediatric Specialty Clinic at UH Rainbow Babies & Children’s Hospital will transform the way specialty care is delivered. Help us bring specialty areas and services under one roof so that patients like Kylin can see multiple providers in one trip. Make your gift today!