CHICAGO — Sitting on a bed at Lurie Children’s Hospital, Levi Krystosek, 10, rubbed a sore spot on his foot.
Levi was born with a rare disease that causes abnormal bone development, often resulting in pain as well as unusually short arms and legs. He was at the Chicago hospital that morning to see Dr. Craig Langman, an expert in the genetic disorder and head of kidney diseases at Lurie.
Levi visits Langman every six months, even though the boy lives in Ocean Springs, Miss. He flies to get to his Chicago appointments — something his parents struggled to afford before finding an organization called Miracle Flights. The Las Vegas-based nonprofit provides free flights for families whose children need to see specialists far from where they live.
“We were, like, how are we going to continue to do this?” said Levi’s mother, Dona Krystosek, adding that the cost of airline tickets was taking a big toll on the family’s savings. She and her husband also have two older daughters.
One night while searching online, Krystosek stumbled upon Miracle Flights, where she now works as a family advocate.
In recent years, the 32-year-old nonprofit had come under fire in the Las Vegas Review-Journal newspaper for questionable spending practices.
CEO Mark Brown took over the reins a little more than a year ago, promising better transparency and more outreach. Brown’s goal is to provide 100,000 flights in the next decade — about the same number the organization has made possible since its inception in 1985.
“Many of the children we fly have rare diseases or illnesses, and there may be one doctor in the country that treats that,” Brown said. “We’ll fly them one time or 100 times, whatever it takes.”
Levi, or “Little Levi” as he’s known, has become a key player in Miracle Flights’ recent publicity campaign. He starred in a Miracle Flights commercial to spread the word about the organization. Last year, he was chosen to take Miracle Flights’ 100,000th trip.
Levi’s rare form of dwarfism has him standing at 38 inches tall, about a foot and a half shorter than most kids his age. He was born with Jansen type metaphyseal chondrodysplasia, a progressive skeletal disorder that leads to “wonky” bones, as Levi and Krystosek call them.
At the time he was diagnosed, Levi was one of only 17 known cases worldwide, said Krystosek, who’s also a nurse.
Langman is one of the few doctors to have treated patients with the highly uncommon disorder.
When Levi was just 18 months old, he started flying to Chicago — sometimes as frequently as every six weeks — to see Langman.
“This doctor’s our needle in our haystack,” Krystosek said.
During his most recent visit in January, Levi arrived at Lurie snappily dressed in a red tie and gray vest over a checked shirt. Fastidious about his sleeves, he kept asking his mother to button and roll them just so.
They’ve been to Lurie so many times, he and his mom have developed a routine. First, they get biscuits and gravy — his favorite — in the Lurie cafeteria. He buzzes around the waiting room like a local and knows which buttons in the elevator honk like a horn.
To qualify for Miracle Flights’ assistance, families must provide a letter from both a referring and accepting physician. Because the children are passengers on commercial flights, they have to meet airline regulations by being medically stable enough to fly. (To request flight assistance, call 800-359-1711 or go to www.miracleflights.org.)
