March 06, 2014
Andrew Preston Akin was born on June 5, 2007. At 10 weeks old, he became very sick and almost died from what appeared to be liver failure. However, his parents soon learned that the cause was an immune deficiency called Hemophagocytic Lymphohistiocytosis (HLH). While Andrew was immediately started on the HLH 2004 protocol consisting of chemo and steroids, and would undergo three bone marrow transplants, he succumbed to the disease on September 5, 2009.
Sadly, Andrew’s older brother Matthew was tested and it was determined he too had HLH. Matthew’s journey proved to be even more challenging and difficult than his brother’s, and after eight long, grueling months, he lost his battle on May 1, 2010.
Named in their honor, the Matthew and Andrew Akin Foundation provides resources for children with HLH and their families going through the bone marrow transplant process. The foundation also helps fund HLH research and educates the public on the importance of joining the National Marrow Donor Program.
The 700 Miles to Hope ride is dedicated to not only Matthew and Andrew’s memories, but to all who have battled this awful immune disorder, those who may be currently fighting and for those that will unfortunately get the diagnosis in the future.
Covering 700 miles in 7 days (Oct. 4 – 10, 2014), the route begins in Natchez, MS and concludes at the Cincinnati Children’s Hospital, where riders will present a check to the HLH Center of Excellence. The ride is timed in conjunction with the 3rd annual “HLH Boot Camp” where doctors from across the country will be at the hospital to learn from the resident HLH experts.
Please consider donating to support one of the riders.
The short trailer and 27 minute documentary below explains the ride and introduce you to some of those affected by this devastating disease.
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"The weekend before Big Frog I was covering an attack in a road race when I had an exercise-induced asthma attack (thanks, allergies).
One minute I'm doing my job, the next it felt like someone was squeezing my lungs and taking my breath away. I argued with myself on whether or not to get off my bike at the side of the road but settled on slowing down, recovering, and finishing the race (alone)."
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