ST. LOUIS, MO (KTVI)– Matthew and Andrew Akin are brothers who died 8 months apart from an immune disorder called Hemophagocytic Lymphohistiocytosis also known as HLH
“It’s a genetic mutation that the child carries. And then when they get exposed to the virus that is the trigger virus for them their immune system fires up to fight the virus then it can’t turn its self off,” explained their father Justin Akin. “There’s an overproduction of white blood cells and then ultimately the immune system goes and attacks internal organs. And the child goes into organ failure and the only known cure is a bone marrow transplant.”
This Saturday, Justin akin will ride his bicycle 700 miles over seven days to raise awareness for his children.
“Children are passing away and the doctors are saying it wasvirus, it was pneumonia, this or that. And it wasn’t. It was HLH,” said Akin.
He is not alone. Marianne Biangardi’s 3-year-old daughter, Claire, was just diagnosed with HLH.
“I was so worried about her because she just laid in my arms. I’ve never seen her like that because she’s normally a spunky, happy kid,” she said.
Biangardi knows how important Akin’s bike ride is for her daughter.
“It’s so nice that he’s going to do this bike ride to really bring awareness to this disease, because if more hospitals and doctors knew about it they could look for this. The early detection is so important,” Biangardi stated.
And lil Claire will be a part of Akin’s journey.
“Every day we do a video dedicating that day’s ride to a child currently fighting HLH. So day 1 will be for Claire and we’ll tell a lil bit about her story,” he said.