Patient Worthy is honored to bring you Levi’s story courtesy of our partners Miracle Flights. Miracle Flights is a non-profit organization that provides pediatric patients and their families free commercial flights to receive life-saving medical care that is not offered in their communities. To learn more about Miracle Flights and consider a donation to the organization, please click here.
Levi, a funny, charismatic 13-year-old from Ocean Springs, Miss., has flown more than 20 times with Miracle Flights along with his family. There are only 28 known cases of Levi’s condition in the world, which made finding specialty care especially difficult. But, with support from Miracle Flights, he’s received life-saving treatment in Chicago and Delaware.
Levi’s form of dwarfism, known as Jansen’s Metaphyseal Chondrodysplasia, causes kidney disease, hearing difficulty and loss of vision. But Levi’s upbeat attitude and sense of humor never waver.
According to his mom, Dona, “Levi is small; about the size of an average 4-year-old. His personality is larger than life. Levi is unable to see out of his right eye because of the optic nerve atrophy. He wears goggles like eyewear to protect his good eye. We call them his ‘superhero goggles.’
“Miracle Flights has been helping Levi get to his specialized medical care for nephrology and orthopedic surgery since he was about 4 years old. Levi has been on several flights provided by Miracle Flights for Kids. He has to travel to Lurie Children’s Hospital in Chicago, Illinois for specialized nephrology care and to the Alfred I. DuPont Hospital for Children in Wilmington, Delaware for specialized orthopedic care. In addition to traveling to Chicago and Wilmington, we take him to Birmingham and Mobile, Alabama. The expense of travel is overwhelming, but we know that by taking him to these specialists he has a chance of a better outcome. His father and I only wish for a pain-free productive life for him. As his parent, I see Miracle Flights as HOPE. I praise them for why he is doing as well as he is. When your child has a condition that is so rare, you have to get them to the specialists for the best outcome. With their help, Levi gets the medical care he needs, and we can do all we can for him. From the moment that the doctor told me to sit down to give us Levi’s diagnosis, all I have ever wanted was a pain-free productive life for him. Miracle Flights is giving Levi his chance at that. We are very grateful for their help.”
Source: Miracle Flights
