Ryan Alam was diagnosed with mitochondrial-membrane protein-associated neurodegeneration (MPAN), a rare form of neurodegeneration with brain iron accumulation (NBIA), but he hasn’t let these conditions slow him down.
He has just joined the U.S. Army Parachute Team to go on a skydiving adventure.
Ryan’s Story
Ryan’s symptoms started in elementary school. But, he perplexed doctors. He went through occupational therapy, aqua therapy, physical therapy, and more, but he still didn’t have answers.
Finally, he was diagnosed with NBIA.
This condition is rare and causes an over-accumulation of iron within the brain. The nervous system progressively deteriorates. Ryan’s version of NBIA, MPAN, is extremely rare. It impacts his movements, speech, and walking ability.
Despite his setbacks, Ryan is determined to live life to the fullest and encourage others to do the same.
The Jump
Ryan’s condition causes him to be wheelchair-bound. But, that didn’t limit him from jumping out of a plane. He was able to do the jump at his high school in Potomac Falls, Virginia.
Ryan did a tandem jump with the Golden Knights. He wore “super pants” to lift his legs up so they were bent at the knee. Ryan was so excited about the jump, and his joy shows in pictures.
Funding MPAN Research
Ryan and his family are working to raise money for MPAN research. To date, they have been able to raise over 350,000 dollars toward this research.
The goal is to find an effective treatment for the condition, to help kids like Ryan live without limits.
But in the meantime, Ryan isn’t letting anything slow him down.
You can read more about Ryan’s story and his jump here.
