LAS VEGAS, Oct. 20, 2020 /PRNewswire/ -- October is Dwarfism Awareness Month, and Robin Worley from Chattanooga, Tennessee, is sharing the story of her family's experience with this complex medical condition, in hopes of inspiring others.
Robin's four children—18-year-old Heidi; 16-year-old identical twins Micah and Noah; and 7-year-old-Teagan—were all born with a common form of dwarfism called achondroplasia. It's a condition Robin also has.
Like many achondroplastic dwarves, the Worley children suffer from serious back issues. Heidi has severe scoliosis, while Micah and Noah struggle with debilitating spinal stenosis. The pressure on their spines is so intense, most days the boys can't feel their legs or even walk the length of the driveway. "It's at a point where their quality of life is gone," says Robin.
Local doctors encouraged Robin to find a physician who specializes in dwarfism, and she did— at Nemours/Alfred I. DuPont Hospital for Children in Wilmington, Delaware, more than 700 miles away. Robin's relief at finding proper care was tempered by concern about the distance her family would need to travel. Sitting in a car for long stretches can be painful for those with achondroplasia; plane tickets for a family of six border on cost prohibitive when added to a growing stack of medical bills.
A Google search led Robin to the national charity Miracle Flights, which provides free plane tickets to families who need specialized medical care far from home. Tomorrow, the Worleys will embark on their 1,400-mile round-trip journey, with Miracle Flights covering the travel cost for all six family members.
"To have part of the financial burden lifted by Miracle Flights, that's huge. That's half the battle," says Robin.
At Nemours, the Worley children will consult with an orthopedic surgeon, neurosurgeon and geneticist to determine their treatment paths—which could include life-changing surgeries for Micah and Noah in the coming months. It's a level of expertise Robin says is simply not available closer to home: "At Nemours, dwarfism is what they specialize in. They understand it. They know what to look for."
Robin hopes her story can inspire other parents to look for expertise beyond their qualified local medical teams—and to know that Miracle Flights is there to help with the cost.
"There are specialists out there who have the knowledge to help you," says Robin. "Sometimes you have to go out of town, out of state, across the country. It's overwhelming to think about the distance, but Miracle Flights is there to get you where you need to go."
To help more families like the Worleys continue their medical journey—or to request a flight for your own family—visit miracleflights.org.
About Miracle Flights
Miracle Flights is a 501(c)(3) nonprofit that provides free air transportation to children and adults who need help reaching specialty medical care only available far from home. The organization, founded in 1985, has provided 132,482 flights and typically books more than 600 flights per month on commercial airlines across the United States. To request a flight, learn more or donate, call 800-359-1711 or visit miracleflights.org. Like us on Facebook and follow us on Instagram.
Press Contact: Erika Koff: (702) 261-0494 or [email protected]
SOURCE Miracle Flights