The girl who pushed herself out of her wheelchair to cross the finish line at the 2013 Cleveland Triathlon is moving to an even bigger stage.
Madelyne Williams, 9, of Kent will represent Akron Children’s Hospital when she attends “Speak Now for Kids Family Advocacy Day” on June 24 in Washington, D.C. Part of the day will include meeting with lawmakers on Capitol Hill.
“Madelyne and her mom [Wendy McNair] will be telling their story to lawmakers,” said Charlie Solley, Akron Children’s government relations director. “It’s really a beautiful thing they’re doing.”
Williams was born 26 weeks prematurely, weighing 1 pound, 9 ounces. She spent her first three months in Akron Children’s Neonatal Intensive Care Unit. Since then, she has been hospitalized more than 30 times, primarily for issues related to her cerebral palsy and chronic lung issues, such as asthma, pneumonia and a collapsed lung.
“Madelyne struggles to deal with pain and spasticity from her cerebral palsy and has had several surgeries, one to remove a portion of her lung, as well as bowel and bladder problems,” McNair said in a news release. “Despite all of this, she always has a smile on her face and always offers kind words to her family and friends.”
Williams is one of 35 children from across the country who will gather in Washington to tell their stories. The goal is to reinforce the importance of funding Medicaid, as well as Children’s Hospitals Graduate Medical Education, or CHGME, which helps cover the costs of training the next generation of pediatric specialists.
Williams’ stay in the NICU cost more than $1 million. Her wheelchair: $36,000.
“That’s more than most cars on my block,” McNair said.
Additional expenses the family faces are Williams’ feeding tube supplies — about $250 per day — as well as a walker/gait trainer.
“We’re honored and excited,” McNair said. “This is a great opportunity, and I’m nervous, but I think it’s important to tell what we’ve been through and help other families with that.”
Williams, McNair and Solley will leave for Washington on Monday with McNair’s mother and Williams’ sister, Lauren. While in the city they will take part in various tours and other activities in addition to the formal meetings.
Grant for Children’s
Akron Children’s Hospital has been awarded a five-year, $467,000 grant to study the optimal treatment for children with convergence insufficiency and attention-reading disability, a common combination of vision disorders.
“When reading or doing close work, a person’s eyes must turn in — converge — for words to be clear and single. This usually happens easily, without thinking,” Dr. Richard Hertle, director of Akron Children’s Vision Center, said in a media release Monday. “With convergence insufficiency, the eyes do not turn in easily, and these children may have trouble with reading and doing close work. They often have blurred vision, headaches, double vision, loss of concentration, frequent loss of place, trouble remembering what was read and difficulty finishing assignments.”
Convergence insufficiency affects 5 to 10 percent of school-age children. They experience more attention-related disorders compared to children with normal binocular vision.
Children’s will begin enrolling patients in August.
For more information about the study, call 330-543-4466.
Katie Nix can be reached at 330-996-3216 or knix@thebeaconjournal.com.