By matt sigler

The Natchez Democrat

NATCHEZ — Justin and Kristin Akin laid their 10-week old son Andrew down for a nap, but when he woke up, their lives were changed forever.

“He was jaundice from head to toe,” Justin said. “We rushed him to the pediatrician, and then ended up in St. Louis Children’s Hospital that evening where the doctors told us that he was in liver failure. He had a 50-percent chance of making it through the night.”

Andrew did make it through that night, but his journey and his family’s journey were just beginning.

“It ultimately took three weeks to get him diagnosed with hemophagocytic lymphohistiocytosis (HLH),” Justin said. “That started a journey of 33 months, four bone marrow transplants spread out over three hospitals.”

After receiving the diagnosis, the family decided to have their oldest son, 4-year-old Matthew, tested as well. He tested positive for the mutation as well.

HLH is a life-threatening immune disorder, and the Akin family was now in two fights with it.

Andrew underwent four bone marrow transplants to combat the disorder, but ended up losing his battle in 2009. Matthew underwent a bone marrow transplant, as well, but just eight months after the death of his younger brother, he lost his battle as well, in 2010.

“It was after Matthew passed away that I knew I needed to buy a bicycle and try to help families that would unfortunately be following in our footsteps,” Justin said. “That is why I started this ride.”

Justin calls the ride “700 Miles to Hope,” and it will be taking place for the fourth year Oct. 4.

Twenty-one cyclists begin in Natchez and ride 700 miles to Cincinnati Children’s Hospital in a week to raise awareness and money for HLH research.

The Akins’ link to Natchez goes back further though, in the form of a traveling nurse.

“Anna McCrory Ward, a Natchez resident, saw the post about us on Facebook,” Justin said. “She reached out and told us that she took care of our son Andrew when we first transferred his care to Cincinnati Children’s Hospital. She asked me if it would be OK to be at the start of the ride last year, and she reached out to the Natchez cycling club, who joined us at the starting line.”

The ride has come a long way since its first year, where Justin took on the task alone.

“It was just me, out there all by myself,” he said. “I was hoping I could grow the ride and that it would be successful, but I don’t know that I ever envisioned someone willing to match what we raised dollar for dollar up to $250,000 and having two videographers come along to film a documentary. It is beyond my wildest expectations.”

Justin said his inspiration for the ride is Jeff Castelaz, the founder of the Pablove Foundation. Castelaz lost his 8-year-old son to cancer.

“I found him on Twitter, and he was riding his bike across the country,” Justin said. “He was the one that motivated me to go buy a bicycle and do this myself.”

This year the ride has five corporate sponsors, including a drug company out of Geneva, Switzerland that has developed the first drugs specifically for HLH. The company is also sending two employees to take part in the ride.

Justin said that this week last year was the best of his life, and he hopes that everyone participating this year, will be able to have that same experience.

“It was an amazing journey between the athletic part of it and the comradery of the group,” he said. “The majority of us have lived in the hospital with our children fighting for their lives. We have this common bond and we know what it is like. It is pretty powerful when we all get together. It is a very special bond we have.”

The ride will begin at 9 a.m. at mile marker zero of the Natchez Trace Parkway on Oct. 4.

For more information on the ride visit www.700milestohope.org.