A 5 year-old Superhero
Somehow the word “Miracle” doesn’t do enough to describe 5 year-old Brett Kingsley. Bright, beautiful, Superhero seem more appropriate! He has defied every statistic and redefined what is possible for children with Spinal Muscular Atrophy (SMA) Type 1, an incurable genetic disease that affects the voluntary muscles of the body. Most children with SMA pass away before their third birthdays. Now at age five, Brett has beaten the odds and continues to do so. Although his muscles are affected and he relies on a ventilator to breath, Brett’s mind is unaffected by his disease. He is a bright, funny, social little boy with so much to give. Brett uses a computer device to talk. He is constantly telling jokes and his family is always overjoyed to hear him say, “I love you.”
We met Brett during the taping of our Every Gift Matters holiday message and we were all so moved to hear him speak through his computer. He and his mom had programmed in all the words he wanted to share and it was joy to watch Brett’s smile when he delivered each line with the push of the big, red button on his wheelchair.
Brett is in the hospital every week for speech therapy, occupational therapy and physical therapy and his visits will continue throughout the holiday season. He had back surgery in the fall 2010 to correct his 80 degree scoliosis and 70 degree kyphosis. He receives daily respiratory therapies through a vest and cough assist machine. His condition is intensively monitored by a dedicated multi-disciplinary medical team that includes pulmonary, orthopedics, physical medicine, ophthalmology and the SMA clinics which includes neuromuscular services. He is truly one of our most special and precious patients.
Due to Brett’s weak muscles he is unable to walk, so his “first steps” were in a motorized wheelchair. His parents, brother and sister sometimes have a hard time keeping up with him! Brett lost his first tooth last year, and his latest milestone is kindergarten. The best part of kindergarten for Brett and his family is knowing the kids in his class accept him as an equal. They don’t care about his equipment. They view him as their friend and classmate. Brett plays baseball on the Central Ohio Miracle League and enjoys going to AKITA family camp. (He loves the soap slide!) He also has a great love for music. His current favorites are Selena Gomez, Laurie Berkner, his church choir, the Columbus Symphony Orchestra and Lemonade Mouth.
Brett never says no to a new adventure or challenge and has a wonderful sense of humor. The Kingsleys long for a cure and Nationwide Children’s Hospital is working to find one. The Kingsleys are confident a solution exists and while living on hope, they try to make Brett’s life full. “Brett has already made a difference in the lives of so many people,” said Allison Kingsley, Brett’s mom. “It is now our turn to make a difference in his life and maybe one day we will get our first true hug from our son when the cure is found.”
I can think of no better voice for Nationwide Children’s Hospital than Brett Kingsley. He is my Superhero and I bet now he’s yours too!