Since the day he was born, Chris and Amie Delavega and their family and friends knew their son was special. Five-year-old Ryan Delavega was born prematurely and spent his first couple of weeks in the neonatal intensive care unit (NICU). Over the following year, Chris and Amie noticed something about their son was different. Ryan’s physical development wasn’t on pace with their daughter Sadie when she was born and other babies Ryan’s age. He was having particular trouble with one side of his body. Looking for answers, Chris and Amie sought counsel from their pediatrician to diagnose Ryan’s condition, and Ryan was started on physical therapy. After months of testing, Ryan’s physical therapist, Deborah Langendoen, noticed similarities between Ryan and some of her other patients and suggested Ryan be tested for cerebral palsy. The Delavegas finally had the answer they were looking for. Ryan was one year old.
With a diagnosis set, Ryan began an extensive physical therapy program with Deborah so he could get a jump on developing the necessary motor skills that would help support muscle functionality and growth. It was during this time when everyone else who met Ryan learned what his family already knew. Ryan was special, he was strong, and he was driven. During his rigorous three-hours-a-week physical therapy sessions and daily at-home regimen, Ryan never let his situation get the best of him, keeping a positive attitude and inspiring others. Along the way he made strides toward his goal of being able to walk on his own, eventually gaining the ability to use a walker.
While Ryan became stronger in his therapy sessions, Chris, Amie, and their daughter Sadie became strong advocates for cerebral palsy awareness. The Delavegas, along with support from family and friends, created a “Raising for Ryan” running team and a “Friends of Raising for Ryan Delavega” Facebook page to keep people connected to Ryan’s progress and to raise awareness and support for people impacted by cerebral palsy. They now have the largest running team for United Cerebral Palsy of Greater Cleveland’s Race to Empower 5k.
In 2017, after years of progress, Ryan began showing signs of regression. In an effort to turn the tide back toward progress, Ryan was selected by Dr. Park of St. Louis Children’s Hospital to have SDR (selective dorsal rhizotomy) surgery. The goal of the surgery was to give Ryan the best possible chance to be an independent walker. With surgery set for December, the Delavegas made plans for their stay in St. Louis. Looking for a place to call home for a few days, the family was connected to the Ronald McDonald House Charities of St. Louis by the Ronald McDonald House of Cleveland. There they found a welcoming staff and the support and resources they would need over the following days while Ryan underwent his operation.
After a successful surgery and return trip home, the family was surprised with tickets to the Cleveland Cavaliers game against the Oklahoma City Thunder in January. Through a partnership between the Cavaliers and the Ronald McDonald House of Cleveland, the tickets included the opportunity for Ryan and Sadie to walk on to the court and stand with the Cavaliers players during the National Anthem. Ryan had made incredible progress following surgery and at the Cavs game was able to walk onto the court and stand next to one of the biggest stars in the NBA, Dwyane Wade. As the National Anthem began, Dwyane reached down and gently took Ryan’s hand to hold during the Star-Spangled Banner. The kind gesture created a special moment in Ryan’s life that he and his family will remember forever.
“The Cavs game for the kids was just incredible,” said Chris about the experience. The moment, captured by Gus Chan of The Plain Dealer, was shared on Cavs social media thousands of times, and Ryan won the hearts of people all over Cleveland. What made the moment even more memorable was having Ryan’s physical therapist, Deborah, able to assist Ryan as he made his way to Dwayne Wade’s side.
Each day Ryan continues to improve, but he still has a long way to go. The family is planning a trip back to St. Louis soon for what should be his final surgery. In the meantime, Chris and Amie have offered to pay it forward and help the Ronald McDonald House of Cleveland through volunteering their time to make a difference.
Through the generosity and support of our community the Ronald McDonald House of Cleveland is able to be a place families like the Delavegas call home during difficult times. To make a difference in the lives of the families we serve, please consider making a donation by clicking the button below.