Levi Krystosek is 10 years old and he loves everything camo, fishing with his father in the bayou behind their home and ambushing his mother with Nerf guns.
He is also one of only 21 cases worldwide with a form of degenerative debilitating dwarfism called Jansen’s metaphyseal chondrodisplasia.
On Wednesday, he flew to Delaware for a doctor’s appointment on the 100,000th flight arranged through Miracle Flights, a Nevada-based nonprofit that pays to fly children with rare diseases around the country to receive medical treatment.
“This will be my biggest flight ever,” said Levi, who already has flown 12 times with Miracle Flights.
For his mother, Dona Krystosek, the flights lift a major burden off her shoulders.
“When you have something so rare, you have to go across the country to doctors,” she said. “Our savings account got used up, credit cards got maxed out.”
Then she found Miracle Flights on Google.
A rare diagnosis
When Levi was born, his mother, a nurse, knew right away something was wrong.
It still took a year to get a definite diagnosis and six months more to find a doctor.
It was overwhelming. You try to carry on life for (two older daughters). Credit cards got maxed out, savings depleted. You feel hopeless. You know what you have to do but how do you do it?
“It felt like forever,” Krystosek said.
At the time, Levi was just the 17th person in the world to be diagnosed with the condition.
Jansen’s metaphyseal chondrodisplasia is a progressive disorder in which portions of the arm and leg bones develop abnormally, with unusual cartilage formations. This affects growth and mobility and can be painful. The bones have trouble absorbing calcium so it builds up in the blood.
There can be other effects, too. Levi is losing his vision and spent a week earlier this month at a special camp in Starkville that teaches children to function without eyesight.
Krystosek said the doctors in Mississippi as well as in Alabama and Louisiana have been great. But with such a rare condition, the family needed to venture farther to find specialists.
The costs started to add up.
“It was overwhelming. You try to carry on life for (two older daughters). Credit cards got maxed out, savings depleted,” she said. “You feel hopeless. You know what you have to do but how do you do it?”
One day she was searching online when she came across Miracle Flights and filled out the application.
21The number of people worldwide with Jansen's metaphyseal chondrodisplasia
When she got the call telling her they had been approved, “I cried.”
“I knew that if we didn’t do something, we wouldn’t be able to continue on,” she said. “Now we can concentrate on the medical stuff.”
Levi has had several surgeries, the latest in 2013 to correct his ankles. These days, he flies to the Alfred I. DuPont Hospital for Children in Wilmington, Del., yearly for orthopedic care. He also visits a nephrologist at Lurie Children’s Hospital in Chicago twice a year.
This week’s trip will be to examine his spine, which has gotten worse over the years. Not only do his parents need to know whether surgery will ever be necessary, the condition puts Levi at greater risk should he ever be injured.
They want to make sure doctors have a game plan.
The nonprofit was started 50 years ago as a service to deliver blood to rural areas of Nevada. Eventually, it flew children on private planes, then switched to commercial airlines. The group has been flying children for 30 years.
With an average plane ticket costing about $500, the savings add up for families.
Now, it flies about 750 children each month all around the country, and sometimes internationally.
Many children, like Levi, make multiple flights through the organization.
“We’ll fly a child one flight or 50 flights,” CEO Mark Brown said.
Some children the service has flown have grown up to enter nonprofit or medical professions, Brown said.
“We’re thrilled we can step in and provide some assistance in their fight,” he said.
Miracle Flights is in the midst of an Ice Bucket Challege–style social media campaign. Officials are asking people to make videos of themselves flying paper airplanes, then ask their friends to #FlyIt4ward and donate.
“Without Miracle Flights, I would probably have my bottom stuck to this,” Levi said, pointing to his wheelchair.
“My legs, my back, my kidneys, everything would be malfunctioning.”
Despite the challenges, Levi is an active kid.
He’s set to start fourth grade in Ocean Springs this fall. He loves to make videos — heavily supervised by his mother — and post them on his YouTube page. He’s become something of a Facebook celebrity – his page has more than 5,000 likes.
When he flies to his appointments, pilots rarely can resist letting him sit in the cockpit.
Levi is small. At 38 inches and about 64 pounds, he’s the size of an average 4-year-old.
But “his size has nothing to do with his personality,” Krystosek said.
He knows his limitations and what he can and can’t do. That’s never slowed him down.
“He lives life to the fullest,” his mom said. “He puts everything in perspective.”
What is Jansen’s metaphyseal chondrodisplasia?
The rare form of progressive, debilitating dwarfism is characterized by bones that do not properly absorb calcium, leaving an excess in the patient’s blood. Portions of the the bones in the arms and legs develop abnormally, with unusual cartilage formations. Bones are weak and may begin to deteriorate. Growth is stunted and some children experience stiffening of the joints. The disease is the result of a spontaneous genetic mutation.