Courtesy Photo | Ryan Alam, a teen fighting a rare neurodegenerative disease, had the opportunity to...... read more read more
The United States Army Parachute Team fulfills a teens’ dream with a tandem jump in front of his peers at Potomac Falls High School April 12.
Ryan Alam, a junior, has an extremely rare neurodegenerative disease that has him wheelchair bound.
The condition is called Neurodegeneration with Brain Iron Accumulation, or NBIA. Of the different types of NBIA, he has mitochondrial-membrane protein-associated neurodegeneration, or MPAN.
“This is a very rare neurodegenerative disease which impacts a person’s ability to walk, coordinate their movements, and speak clearly,” said Dr. Jamie Fraser, a medical and biochemical geneticist and director of the Myelin Disorders Program at Children’s National Hospital.
Ryan was only recently diagnosed after 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, and genetic testing confirmed the diagnosis.
Tuba, Ryan’s mom, says that despite his condition, his goal in life is to help others like him find a cure so that they can live a full life.
“Ryan always wanted to be a stuntman and a football player while growing up, or a Soldier,” said Tuba. “So 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.””
Serving under the leadership of the United States Army Recruiting Command and Marketing Engagement Brigade as the 'Official Ambassadors of the Army'. The USAPT, nicknamed Golden Knights, annually reaches a third of our nation by performing spectacular live parachute demonstrations for the American public, manifesting the
“Band of Excellence” displayed by all U.S. Army Soldiers around the world.
The Golden Knights are very trained and equipped to assist in most requests even ones that require special accommodations.
“In these types of jumps, we use a pair of pants that we call ‘super pants’. These pants assist the tandem student in lifting their legs by having a lifting point at the knee,” explains Sgt. 1st Class Chris Acevedo, a tandem team instructor. “I’ll literally have
Ryan’s back.”
The Tandem Team of the USAPT, consists of Soldiers selected from a core of highly-qualified parachutists from within the unit. These patrons put their lives directly in the hands of our Soldiers who demonstrate the positive aspects of teamwork, courage, discipline, professionalism and excellence.
“Ryan is a warrior! I have been surrounded by warriors my entire career,” said Acevedo. He deals with MPAN as an every day ordeal; in my opinion that gives him the heart of a warrior and it is my pleasure and highest privilege of my career to take Ryan on this Army experience.”
The Golden Knights aren’t the only ones inspired by Ryan and his family’s perseverance. Children’s National had spent a lot of time working with and conducting research on Ryan’s disease.
Dr. Fraser, whose research program at Children’s National focuses on the biology of neurometabolic disorders, has been conducting research on this disease since 2019 after Ryan’s family started a campaign to help raise money for research.
“This work started because of Ryan,” said Fraser. “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.”
The Alam family has been active advocates in raising money for the research since they were made aware of the diagnosis.
“Because this condition is so rare, there’s next to no money going towards research, said Tuba. “
The family has reached their goal of $350,000 for the MPAN research. They want to continue to spread awareness so kids like Ryan who are diagnosed with a rare disease can have a chance to a normal life.
#BeLikeRyan
Living his Life to the Fullest.
#30#
| Date Taken: | 04.12.2021 |
| Date Posted: | 04.13.2021 10:02 |
| Story ID: | 393695 |
| Location: | POTOMAC, DISTRICT OF COLUMBIA, US |
| Web Views: | 360 |
| Downloads: | 0 |
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