Benjamin Dworning is just 10 and has already traveled to just about every corner of Ohio. Unfortunately, his travel has been for health care rather than fun and adventure.
Ohio parents are blessed to have a network of nationally-ranked children’s hospitals – all within a few hours’ drive or less and Paul and Nicole (Nikki) Dworning, of Highland Heights, have tapped into that expertise all the way from Cincinnati Children’s to Rainbow Babies and Children’s, the Cleveland Clinic and Akron Children’s closer to home.
Diagnosed with Down syndrome and achondroplasia, a type of skeletal dysplasia or dwarfism, Benjamin has been treated by pediatric specialists in orthopedics, cardiology, genetics, nephrology, pulmonology, neurology and neurosurgery, ophthalmology, allergy and immunology, as well as speech, physical and occupational therapists.
“Yes, we’ve been on a world tour not only of Ohio’s children’s hospitals, but Ronald McDonald Houses,” said Nikki. “But Benjamin is a pretty unique guy and once we find a doctor we like, we value that relationship. Honestly, overall, we feel blessed to have the resources we have.”
On July 11-12, Paul, Nikki and Benjamin joined Michael Wellendorf, government relations specialist, on a trip to Washington, D.C. to represent Akron Children’s at the Children’s Hospital Association’s annual Family Advocacy Day (follow on social media at #SpeakNowForKids).
They met with Sen. Sherrod Brown, Rep. Tim Ryan and other lawmakers to discuss the proposals the House of Representatives and Senate are discussing as replacements to the Affordable Care Act, including changes to Medicaid. Since 30 million of the 70 million Americans covered by Medicaid are children, any cuts or changes to Medicaid would have a serious impact on children and children’s hospitals.
Benjamin’s short stature has affected nearly every aspect of his growth and development. Nikki and Paul were greatly relieved to learn that expertise in skeletal dysplasia was as close as Akron Children’s with Dr. Dennis Weiner, the longtime chairman of the hospital’s Orthopedics Department, an international expert and author of numerous studies in skeletal dysplasia. Through Dr. Weiner and Dr. Richard Pauli, a medical geneticist from Wisconsin who conducted skeletal dysplasia clinics at Akron Children’s, they received in-depth guidance and direction on Benjamin’s many health challenges.
Benjamin has been a fighter since Day One.
He was diagnosed with Down syndrome within his first week of life, and, after a year of being in and out of the hospital due to his failure to thrive and significant breathing and heart challenges, he was also diagnosed with achondroplasia. He has undergone 8 brain surgeries, multiple airway and stomach surgeries and numerous procedures that continue yearly.
This past January, Dr. William Schrader, an Akron Children’s orthopedic surgeon, performed a partial fibula resection to remove excessive bone growth on his legs. The surgery made Benjamin’s legs less bowed and dramatically improved his ability to walk and be more active.
Shannon Leslie, Orthopedics case coordinator, has worked with the Dwornings for several years and believes they are a perfect family to represent Akron Children’s on Capitol Hill.
“They are the quintessential middle-class family faced with big medical challenges,” Leslie said. “No family – not even those with 2 working parents – would be able to handle the medical bills they have faced without help. And they are truly great advocates for Benjamin, getting him the care he needs, making informed decisions, while also being great parents to two other children.”
“With as many surgeries, specialists, hospital stays, home nursing and therapeutic interventions he has required, his overall health and quality of life has been greatly enhanced due to Medicaid and the Children’s with Medical Handicaps Program (BCMH),” said Nikki. “These programs have allowed us to focus on his needs and even dream for a healthy future.”
Through it all, Benjamin has remained a kid who loves to break into dance – and just may have a future in musical theater. His favorite things include the Wiggles, Kids Bop, playing play baseball and being with his family.
He brings a smile to his parents or siblings when they are having a bad day, enjoys meeting new people and is always generous with his high fives and hugs.
“Benjamin might be small but he is mighty,” said Nikki. “He’s a captivating kind of kid. Every day, I see him change hearts. We need more of that in Congress.”