He was also gifted a gurney from Mercy Flights so he can travel not only in style, but in comfort.
“They had said he has PKAN, pantothenate kinase-associated neurodegeneration. Chances to get it are 1 in million, and he’s 1 in a million – and at the time, he was the first child in Oregon diagnosed with it,” said his mom, Courtney.
On Saturday, 12-year-old Carter Anderson, and his parents, Blair and Courtney, were gifted a Stryker gurney from Mercy Flights to go along with a new ambulance it recently purchased.
However, it’s not your average ambulance.
It’s a special one named ‘The Carter Mobile’ and it’s purpose is to help move Carter to his next destination.
“It starts out looking like cerebral palsy, but as it goes… he’s missing an enzyme that breaks down the iron in his brain, so as he grows up or it gets further along, he starts losing normal functions of walking, talking, eating, chewing and eventually, breathing,” Courtney said.
Carter’s parents say that typically, children with PKAN die by the age of 10-years-old since the neuromuscular communication happens so quickly, the child will have a massive heart attack or quit breathing.
They say the new gurney and ambulance will help with transporting Carter around immensely.
“He had a hard time sitting up anymore, so I was having to sit next to him on a milk crate to keep him from [moving] — PKAN has dystonia, kind of like Parkinson’s, so he’s always moving around.”
His parents are hopeful things will get better.
Carter is currently part of a medical trial, that they believe has helped slow his disease down.
“He’s been on this trial for over a year now and we’re seeing little bits of hope, so hopefully things are working, we don’t really know the results yet,” said Courtney.
If you’d like to learn more about the disease, or donate towards finding a cure, visit nbiacure.org.