Family raises awareness and funds after son's rare diagnosis

The Alam family at a recent birthday celebration. 

A Loudoun County family is raising funds to find treatment options for their son's recently diagnosed rare neurodegenerative disease.

When 15-year-old Ryan Alam, a student at Potomac Falls High School in Sterling, was in elementary school, his parents Tuba and Faisal began to see red flags when it came to his walking ability.

They took him to multiple doctors and had tests to determine the cause of his mobility issues. When he was in sixth grade, a doctor diagnosed Ryan with a minor case of cerebral palsy.

Over the next few years, the Alams tried occupational therapy, physical therapy, private fitness training and aquatherapy, but nothing was helping.

“Something didn't make sense, everything we tried wasn't working. As a mother I know my child, and when something is wrong I feel it,” Tuba Alam told the Times-Mirror.

The family eventually went to another doctor who requested a MRI scan of Ryan's brain and found an accumulation of iron. Ryan was diagnosed with NBIA – MPAN.

NBIA is a progressive neurodegenerative disease that leads to patients developing the inability to walk, dementia, Parkinson's disease, loss of ability to swallow and problems with vision. There are different types of NBIA, including PKAN, MPAN and BPAN. Since 2001, there have been around 500 known cases of NBIA worldwide. Fewer than 100 of those have been MPAN, which is caused by a single defective gene that is related to mitochondrial function.

“Ryan is a great kid who has challenges. It takes him longer and a lot more energy to do things, but he has a great attitude and is aware of what could happen to him. He has decided to live his life like every day is the last day of his life,” his mother said.

There is no cure for any form of NBIA; all doctors can do is treat the patient's symptoms. Since the condition is so rare there is virtually no money for research.

The Alams hope that by raising money for research, other kids will benefit in the future.

“We feel so helpless, and we want to do something to make a difference. None of the funds we raise will go toward Ryan's medical bills. It is all for researching the disease,” Tuba Alam said.

More information can be found at the Alam's fundraising page at childrensnational.donordrive.com/campaign/Help-Cure-NBIA-MPAN.

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