December 2022 Special Needs Living Akron/Canton

INSPIRATIONAL PERSPECTIVE: OVERCOMING CHALLENGES

You are going to love getting to know Kyle Nottingham

WRITTEN BY DEBORAH RILEY PHOTO BY JULIAN CURET

Kyle Nottingham is an impressive young man who has overcome the odds time and time again. Throughout his 14 years, he has conquered many challenges in his life. After not meeting milestones as an infant and toddler, Kyle was initially diagnosed with Cerebral Palsy in 2009. However, two years later, in 2011, it was determined that Kyle did not actually have Cerebral Palsy. In fact, he was diagnosed with Leukodystrophy. “Leukodystrophies are a group of rare, progressive, metabolic, genetic diseases that affect the brain, spinal cord, and often the peripheral nerves.” (https://rarediseases.org/rare-diseases/leukodystrophy/) Kyle has experienced multiple surgeries, numerous hospital stays, lung collapses, intubation, and even cardiac arrest in January of 2022. Through it all, his mom Jenny has been there by his side, working with his doctors to advocate for Kyle’s needs. Jenny has worked hard to build a team of doctors whom she is able to trust. Jenny loves his care team at Akron Children’s Hospital. She wants parents to know that you don’t have to stick with a doctor you don’t like. She says to make sure that you like and trust the doctors in charge of your child’s care.

Leukodystrophy has created and continues to create many challenges for Kyle to surmount. According to Jenny, Kyle is dependent on others for all aspects of his care, is non-verbal, and utilizes a manual wheelchair. At school, Kyle utilizes a “talker” with a switch, while at home, he raises his left arm to indicate an answer of “yes.” The Nottingham family lives in a two-bedroom, two-story home in Massillon. They have had to make accommodations to their home, such as turning their dining room into a bedroom for Kyle. Jenny feels fortunate that Kyle’s waiver was able to cover a new wheelchair lift for the front of his house, as their previous ramp was not adequate. His waiver also allowed for a walk-in shower to be installed to accommodate his bath chair. However, one thing that Jenny feels would make their life much easier would be a wheelchair van with a lift. Unfortunately, the cost has prohibited them from obtaining one.

In many ways, Kyle is a typical eighth-grade boy attending Massillon Junior High. He’s outgoing with a great sense of humor. He enjoys art class, hard rock music (the harder, the better), the Kansas City Chiefs, the Akron Rubber Ducks, and loves to flirt. His personality is infectious, and people are genuinely drawn to him! He loves being with his peers and is very social!

Kyle is an active guy! Before COVID-19, Kyle participated in Dance Unlimited through the Akron Children’s Hospital and camp through the ARC. He has even thrown out the first pitch at the Akron Rubber Ducks a few times. Currently, he participates in the Canton Challenger Baseball League and loves his team. He’s got a special group of boys on the team who he is especially close to. In 2019, he was introduced to the running community when he was chosen as mile marker 25.5 Super Hero for the Akron Marathon. Through someone he met during the marathon, Kyle was introduced to the idea of “running” a race. Since then, with his friend Sarah, Kyle has participated in multiple local 5k races and two of the races in the 2022 Akron Marathon Race Series. Sarah pushes him in the races using a special needs running cart. Sarah and Kyle have a special relationship, and Jenny jokes that Sarah is the puppet and Kyle is the puppet master. Sarah helps a lot with Kyle providing childcare and assisting when he’s in the hospital when they’re not running races together.

Kyle is an amazing guy who you can’t help but love for his personality and admire for all that he continues to overcome. I will leave you with these words from Jenny, “Even though your child is different, try not to treat them any differently. Don’t let their disabilities define them. They are aware of more than you think. Everything we do, we try to make it so that Kyle can be included and not treated differently than anyone else.”