Teen in Wheelchair with Rare Neurodegenerative Disease Skydives with U.S. Army Parachute Team
"It is my pleasure and highest privilege of my career to take Ryan on this Army experience," said Sgt. First Class and tandem team instructor Chris Acevedo
A Virginia teen is refusing to let a debilitating disease define his life and recently got the chance to prove it by going skydiving with the U.S. Army Parachute Team.
On Tuesday, Ryan Alam was given the opportunity to go on a tandem jump with a member of the Golden Knights, which is the U.S. Army's Parachute Team, ABC affiliate WJLA reported.
Though Ryan lives with a rare neurodegenerative disease and is in a wheelchair, he didn't let that stop him from free-falling outside of his high school in Potomac Falls, according to the outlet.
"It is my pleasure and highest privilege of my career to take Ryan on this Army experience," Sgt. First Class and tandem team instructor Chris Acevedo, who went on the jump with Ryan, told the outlet.
Ryan was in elementary school when symptoms of his disease started presenting, WJLA reported.
Doctors were initially stumped and suggested a multitude of treatment options, including physical therapy, aqua therapy, occupational therapy, and private trainers, but have since concluded that Ryan has a disease called neurodegeneration with brain iron accumulation (NBIA), the outlet reported.
NBIA is a rare, inherited, neurological disorder "characterized by an abnormal accumulation of iron in the brain and progressive degeneration of the nervous system," according to the National Institute of Neurological Disorders and Stroke.
In Ryan's case, he has a version of NBIA called mitochondrial-membrane protein-associated neurodegeneration (MPAN), WJLA reported.
"This is a very rare neurodegenerative disease which impacts a person's ability to walk, coordinate their movements, and speak clearly," Dr. Jamie Fraser, a medical and biochemical geneticist and the director of the Myelin Disorders Program at Children's National Hospital, explained to the outlet.
Despite being diagnosed at such a young age, Ryan's mother, Tuba Alam, said her son has vowed to make the most of life and hopes to inspire others like him.
"Ryan always wanted to be a stuntman and a football player while growing up, or a soldier," Tuba explained to WJLA. "When we found out about his diagnosis, his dad and I decided that we were going to give him as many experiences that we can while he's here."
"As he would say, 'living his life to the fullest,'" Tuba added.
In order to make the jump happen for Ryan, Acevedo said the Golden Knights — who perform more than 100 live demonstrations per year, according to their website — had to give the teen a special pair of pants called "super pants."
"These pants assist the tandem student in lifting their legs by having a lifting point at the knee," Acevedo explained to WJLA. "I'll literally have Ryan's back."
As shown in photos posted by the Golden Knights on Instagram, the jump went off without a hitch and Ryan was able to successfully free-fall with Acevedo.
"Through this process, Ryan has stayed positive and energetic. #belikeryan," read the caption of the photos, which were snapped in the air and outside of Ryan's high school.
Added Acevedo to WJLA: "He deals with MPAN as an everyday ordeal; in my opinion that gives him the heart of a warrior."
As he continues to live his life, Ryan's family has been raising money to fund MPAN research, according to the outlet.
So far, they've raised $350,000, which has helped medical professionals — including Dr. Fraser — learn more about the disease, WJLA reported.
"This work started because of Ryan," Fraser told the outlet. "His parents have been great advocates for him and MPAN research. They ensure that Ryan is living his best life while enabling us to study the biology of MPAN toward a goal of an effective treatment."