A Kent girl who pushed through spastic cerebral palsy and out of her wheelchair with minimal assistance to earn gold at the 2013 Cleveland Triathalon is now taking her tenacious spirit and friendly smile to Capitol Hill.
Madelyne Williams, 9, who begins fourth grade at Davey Elementary School this fall, and her mother, Wendy McNair, will be among more than 30 families heading to Washington D.C. on Tuesday to represent Akron Children's Hospital at the annual "Speak Now for Kids Family Advocacy Day."
The duo will be joined by the hospital's lobbyist in meeting with senators and U.S. representatives as the family shares Madelyne's story in advocation of governmentally supported programs that have helped the young girl persevere through a premature birth, spastic cerebral palsy, chronic asthma and a litany of surgeries.
"She's a beautiful girl with a wonderful spirit. I hope in life I experience half the difficulties she has, and that I face it with that much grace and love," said Charlie Solley, Akron Children's government relations director, who will join the family on Capitol Hill. "We're really excited to have her as our advocate."
Madelyne, a micro preemie, was born 14 weeks early. She weighed just 1 pound, 9 ounces and spent the first three months of her life in the Akron Children's Neonatal Intensive Care Unit.
Madelyne's twin brother, Mason, died three days after their birth.
"It was very hard," Wendy said. "We were never sure she was going to make it."
Since then, Wendy estimates Madelyne has been hospitalized more than 30 times for various reasons.
At 2 years old, Madelyne had a portion of her lung removed.
Winters exacerbate her chronic asthma, and she often catches pneumonia in the cold months.
She eats through a feeding tube and gets about 30 botox shots every three months in her legs to relax the muscles.
"It's hard for me," Madelyne said. "It's hard to walk."
"You just got to keep trying," her mother says.
"I know," Madelyne replies. "I will."
Madelyne faces every challenge with a heartwarming smile on her face, whether buttoning her shirt in the morning, playing basketball -- her favorite sport -- or taking a couple steps.
"I also like swimming," she said with a grin. "I like to float. I can't move my legs, but I can move my hands."
Madelyne plans to make strides in her efforts to walk when she turns 10 this November.
"She has taught me that to get through anything, all you have to do is smile," Wendy said.
Besides Madelyne's indomitable will, Wendy credits Medicaid and the Akron Children's staff with helping her survive.
"They're really nice," said Madelyne of her nurses and therapists.
Madelyne's stay at the NICU cost more than $1 million. Her food costs about $250 a day, and her motorized wheelchair is another $36,000.
"I think that piece of equipment costs more than any car on this block," Wendy said.
Solley said the family will help advocate for the Children's Health Insurance Program, which provides matching funds to enhance eligibility for children on Medicaid, Children's Hospitals Graduate Medical Education, which funds education for future pediatricians, and the importance of Medicaid itself.
"If we didn't have Medicaid and Akron Children's, I don't know that Madelyne would be here right now," Wendy said.
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