2014-06-17 13:11:58 by Holly Pupino, Media Relations Specialist, as posted on the inside.akronchildrens.org blog.
The little girl who pushed herself out of her wheelchair to cross the finish line at the 2013 Cleveland Triathlon on her own 2 feet is ready for her next big adventure – meeting with lawmakers on Capitol Hill.
Madelyne Williams, 9, of Kent, Ohio, will represent Akron Children’s Hospital at this year’s “Speak Now for Kids Family Advocacy Day” June 24, sponsored by the Children’s Hospital Association.
“Madelyne will be a perfect advocate for Akron Children’s because having a pediatric hospital so close to home has saved her life on multiple occasions,” said Charlie Solley, Akron Children’s government relations director, who will be accompanying Madelyne and her family to Washington, D.C.
Born premature at 26 weeks and weighing just 1 lb., 9 oz., Madelyne spent her first 3 months of life in Akron Children’s neonatal intensive care unit. In her short 9 years, she has been hospitalized more than 30 times, primarily for issues related to 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,” said her mother, Wendy McNair. “Despite all of this, she always has a smile on her face and always offers kind words to her family and friends.”
Madelyne’s caregivers at Akron Children’s have been so inspired by her courage that they’ve been part of “Madelyne’s Team” at the Cleveland Triathlon, which raises funds for United Cerebral Palsy of Greater Cleveland.
After several years of watching and cheering on her team members, which have included Dr. Suneet Sahgal (swimming), nurse Kathy Duritza (cycling), and Dr. Cristina Victorio (running), Madelyne walked across the finish of the 2013 triathlon wearing braces, and with minimal assistance.
Madelyne’s family will join Solley in meeting with Ohio’s 2 senators and several U.S. representatives from northeast Ohio.
Madelyne is 1 of about 30 children from around the country who will convey their real-life stories and struggles, reinforcing the importance of children’s hospitals and the funding they receive from programs such as Medicaid and Children’s Hospital Graduate Medical Education (CHGME), which helps cover the costs of training the next generation of pediatric specialists.
“I know Madelyne’s stay in the NICU was more than a $1 million and her wheelchair is $36,000, more than most of the cars on my block,” said McNair. “Her feeding tube supplies are $250 a day. Plus, there’s the walker, gait trainer, braces, baclofen pump, and all the doctors’ appointments. Without Medicaid, we could not do it.”
Madelyne will be starting 4th grade at Davey Elementary School in the fall. She loves arts and crafts, her iPad, and Mickey Mouse. Her brother, Brendan, 16, and sister, Lauren, 13, are her “heroes,” supporting her, cheering her on, and always making sure she feels included and involved.
(8 a.m.-4:30 p.m.)
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