A champion in our midst
A Columbia Falls boy stepped on the national stage last month, fulfilling one more phase in his role as Montana’s 2014 Champion for Children’s Miracle Network Hospitals. On his November trip to Washington, DC, and Orlando, Florida, Jason Albin joined 64 other Champions from across the United States as they helped shine a light on the healing work accomplished through Children’s Miracle Network Hospitals. Jason’s connection comes through years of support and care from Shodair Children’s Hospital in Helena.
Jason, who turned 11 in August, received standard genetic testing when he was born that showed he has phenylketonuria, also known as PKU. Because of the rare metabolic condition, his body can’t break down amino acids and therefore he can’t eat foods most people take for granted. Instead, he follows a regimented plan, ingesting special medical formula and eating solid foods in very limited quantities. His mom, Michelle Albin, calls it a “diet for life.”
“We’ve never had trouble fighting him with his disorder management,” Michelle said. “He’s highly intelligent; he gets straight A’s in school and is in advanced academics. We’ve been dealing with this since he was born, so it’s just a way of life. Every six months he sees the metabolic team – a geneticist, dietitian, nurse coordinator and genetic counselor, who all follow up on his condition. This is life-long.”
The Columbia Falls Junior High sixth-grader is a model for others living with this genetic disorder, as he assumes more and more responsibility for taking his medications, carefully reads labels in the grocery store, and stays on track through appointments at the metabolic clinic. Shodair’s metabolic team conducts these clinics statewide; in Kalispell, the Flathead City-County Health Department provides the space.
Tessa Pitman is a certified genetic counselor with the Medical Genetics Department at Shodair, and is based permanently at KRMC’s Bass Breast Center. Her work with Jason has taught her to admire his resolve to live a full life by managing his condition correctly.
“He’s such an incredible young boy. Jason does well and his family is incredibly supportive,” Tessa said. “They’re a definite presence in our metabolic clinic. He is a joy to care for.” She particularly appreciates the great questions they ask at clinic.
“They have an active role in the metabolic clinic, but also in the metabolic community in Montana. Jason is a great representation of overcoming challenges related to a diagnosis, while at the same time not letting it affect who he is.”
Besides being an outstanding scholar, Jason was in Boy Scouts when he was younger and is one of Montana’s best young soccer talents. It’s a great testimony, considering that, without proper management, PKU can cause severe irreversible intellectual disabilities and neurological deficits.
Jason, his older brother Russell, his mom Michelle, and his grandmother Deanna Kennedy made the November trip to Washington and Orlando, where the Champions from the United States, Canada and Puerto Rico were treated like superstars. Jason met a slate of celebrities and even got to hug First Lady Michelle Obama.
“I think Jason is finally getting OK with having a diagnosis of a metabolic disorder after seeing all those other children and what they have to deal with,” his mother said. “He’s taken on more responsibility for his own care.”
Jason’s role as a Champion is to be an ambassador for the 62 kids treated every minute at 170 member Children’s Miracle Network Hospitals, and to advocate for the charitable need at children’s hospitals across North America. Learn more at www.shodair.org.
Jason is pictured here with his older brother, Russell, during their November trip to Washington, DC, and Orlando, Florida, where Jason joined other Champions for the Children's Miracle Network Hospitals.
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