Sterling Teen with Rare Disease Takes the Field for Potomac Falls

Ryan Alam has an extremely rare neurodegenerative disease that has him wheelchair bound. But that did not stop him taking the field Friday night for the Potomac Falls High School Panthers during their homecoming game.

Ryan, 15, donned the #1 jersey and joined the team as an honorary captain for the coin toss at center field before the Panthers’ game against the Riverside High School Rams.

Ryan Alam joins the Potomac Falls High School Panthers for the coin toss at their homecoming game Friday, Sept. 28. [Renss Greene/Loudoun Now]

He has a rare disease called neurodegeneration with brain iron accumulation, or NBIA. Of the different types of NBIA, he has mitochondrial-membrane protein-associated neurodegeneration, or MPAN. According to Children’s National Hospital, since 2001, there have been about 500 known cases of NBIA in the world. Fewer than 100 of those have been MPAN.

It is a disease that leads to an inability to walk, dementia, Parkinson’s disease, an inability to swallow, problems with vision, and other problems, and there is no known cure today. Because it is so rare, there is little money for research.

Ryan was only recently diagnosed. His family noticed his gait had changed late in elementary school, but after years of doctors, physical therapy, aqua therapy, occupational therapy, and private trainers, his condition was a mystery until the iron accumulation showed up on an MRI.

But despite being diagnosed with what is today an incurable disease, Ryan is known for his positive attitude. He is famous for always having a smile on his face, as Potomac Falls Panthers coach Paul Barnes can attest to. Barnes said he knew Ryan from teaching gym class.

“I got to talk to him in the hallways and we just became friends, and [he’s] a real inspiration,” Barnes said. “Because like I’ve always said, your bad day was his best day, and he’s fighting and struggling, but you would never know it. He never complains.”

That attitude and perseverance became an inspiration for both Barnes and the football team.

“He really had an impact on not only me, but a lot of our guys, too, so we decided that, hey, let’s make him an honorary member,” Barnes said. Ryan went to practices and dinners with the team leading up to the big homecoming game.

And Ryan might be back for some more games, said his mother, Tuba.

“Now he’s completely motivated, because he loves this,” Tuba said. “He loves football, he loves being part of a team.”

Ryan, eager to get back to the sidelines to watch the game, said practicing for the team is fun, and if he could play a position it would be quarterback.

Faisal and Ryan Alam watch the Potomac Falls High School Panthers homecoming game Friday, Sept. 28. [Renss Greene/Loudoun Now]

The family has launched a fundraiser to help find a cure for NBIA-MPAN, collecting donations through Children’s National Hospital. And not a cent of it goes to the family, said Ryan’s father, Faisal.

“This is all going 100 percent to research, it doesn’t go to paying his medical bills,” Faisal said. “We pay his medical bills. We’re not asking anybody for help for our family. It’s for research for kids like him.”

Donations are accepted at childrensnational.org/CureMPAN. Comments on that page are already filled with stories from people who have met Ryan and found him joyful and resilient. Already, close to 400 people and families have given, ranging from a few dollars to a $25,000 donation from professional services firm Ernst & Young.

There is also a video telling Ryan’s story online at youtu.be/JZoqLe-MmRE.

“We are humbled and grateful for the outpouring of support by this community,” said Faisal said. “We just ask people to keep Ryan and other kids like him that are afflicted by rare conditions in their thoughts and prayers and help do something about it and raise funding, because there’s no funding going to any of these rare conditions.”

Ryan Alam waits with the Potomac Falls High School Panthers to be announced ahead of the team’s homecoming game Friday. Sept. 28. [Renss Greene/Loudoun Now]

“I know everyone has a struggle in life, but you can look at Ryan and say hey, if he can fight what he’s going through, you can fight and get through what you’ve got to get through,” Barnes said. “You think you got it tough, spend a day with him, and you’ll see what tough is.”

For questions, contact Tuba Alam at 703-627-7971 or soni18ta@gmail.com.

rgreene@loudounnow.com

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