Claire Biagnardi is a little girl from St. Louis who likes to put on sunglasses and ham it up as she plays her toy guitar. But the 3-year-old is providing big inspiration for a group of men who are bicycling 700 miles in 7 days to raise awareness about a deadly disease called HLH.
HLH is a life-threatening immune system disorder that hides behind a maze of contradictory symptoms. Tagged with a tongue-twister formal name that underscores its complexity, hemophagocytic lymphohistiocytosis is difficult to detect early and effectively treat. Claire was recently diagnosed with the disease.
Justin Akin is a father who lost both of his sons – 2-year-old Andrew and 5-year-old Matthew – to HLH. He is leading a group of five bicyclists all the way from Natchez, Miss., to the front door of Cincinnati Children’s. When the group arrives at the medical center this Friday, they plan to present a check for $75,000 to the medical center’s HLH Center of Excellence.
Also from St. Louis, Akin says Claire and six other children and young adults with HLH will be accompanying the riders in spirit as they make their journey. Each day’s ride will be dedicated to a patient currently battling the disease, and the first day was in honor of Claire and her fight. You can hear Akin talk about his journey and mission against HLH – and you can meet Claire and her mother – by watching this news clip from the Fox television affiliate in St. Louis.
Each of the riders joining Akin has been affected personally by HLH. Among them is 23-year-old Sean Feltoe, an HLH survivor from Canada who was treated at Cincinnati Children’s.
Akin, who said he rides for his sons who will never be able to ride their own bicycles down a street or sidewalk, is honored to to ride with Feltoe.
“Since I’ll never be able to experience this ride with my sons, I am thrilled to be able to ride with Sean in their place, a survivor who provides hope against this deadly disease,” Akin said.
After their sons died, Akin and his wife, Kristin, established The Matthew and Andrew Akin Foundation. According to Akin, this ride and foundation’s efforts focus on supporting the four core priorities of the medical center’s HLH center – research, education, clinical care and family support.
After the cyclists arrive in Cincinnati on Friday, on Saturday Cincinnati Children’s will host a national HLH conference, where families and physicians can learn about the latest advancements to diagnose and treat HLH.
One of the riders, Olivier – the father of an HLH survivor, has blogged throughout the ride, documenting each day.
Robert Mills of MillsFilms traveled with the riders during their journey. The resulting documentary is nothing short of stunning.
You can watch the full-length (26 minutes) documentary here: http://youtu.be/52adKOxZ8u8