Words cannot describe the agony of parents watching their child’s health decline day over day, month over month, year over year. It’s unspeakable, unable to compare to any other pain—unless it’s watching both of your children pass away from the same genetic disease.
Justin Akin, general manager at All Star Dodge Chrysler Jeep Ram (an Eyewitness Surveillance client), and his wife Kristin suffered with their sons, Matthew and Andrew, as they struggled with Hemophagocytic Lymphohistiocytosis (HLH). The life-threatening immunodeficiency causes the body to create overactive immune cells that attack healthy tissue.
Rebuilding Strength from Loss: The Matthew and Andrew Akin Foundation
While both Matthew and Andrew lost their fight with HLH, their parents continue the war against their genetic disorder through the Matthew and Andrew Akin Foundation. Its continuing mission: to inform the public about this disease and its treatment; to invest in both research and the families struggling to cope with mounting bills; and to inspire others to continue the fight.
Justin summed up the foundation’s goals best. “Even if the worst case scenario happens,” he says, “you can get through this, you can thrive in life, you can go and inspire others.”
The decision to begin the foundation in their memory was “pretty immediate,” Justin says, remembering the support and help that they received transferring their sons’ care to the Cincinnati Children’s Hospital Medical Center (CCHMC). Both Justin and Kristin knew that the foundation would be a way to give back to those who would unfortunately follow in their footsteps, as well as keeping the memory of their sons alive and well.
The Matthew and Andrew Akin Foundation raises money to support ongoing HLH research and treatments at the HLH Center of Excellence at CCHMC—an organization created in conjunction with the Akins and two other HLH-affected families. The foundation also helps pay for newly diagnosed families’ airfare and relocation efforts to ensure the children receive the absolute best medical care possible.
For the Akins, it’s a way to offer to other families the sort of guidance they initially lacked at the beginning of their medical fight.
“If we’d gone to Cincinnati sooner,” Justin says, “at least one of our children would be here right now.”
The 700 Miles to Hope Fundraiser
The greatest fundraiser the Matthew and Andrew Akin Foundation holds is the 700 Miles to Hope bike ride happening this week, as 20 bicyclists spend seven days traveling 700 miles through five states. They’ll bike from Natchez, Missouri, to the threshold of CCHMC to kick off the HLH Center of Excellence’s annual research conference. (For today’s ride on September 20, 2017, they’ll bike from Florence, Alabama, to Nashville, Tennessee.)
Justin says the original idea for a memorial bike ride came from Jeff Castelaz’s rides in honor of his son, Pablo, who passed away from a rare children’s cancer—bilateral Wilms’ Tumor—after a year of medical treatments.
To cope with the loss of his son, Jeff began to ride his bike longer and longer, further and further. Eventually, “Pablo’s Ride” became a movement to honor his son’s memory, while raising awareness and funding for treatment through the Pablove Foundation.
As a competitive cyclist, Jeff was better equipped than Justin for his long-distance cycling goals. “I decided to ride from Amarillo to Chicago up Route 66—1200 miles,” Justin recalls. “Day two, I crash somewhere in Oklahoma and broke my shoulder.”
Justin didn’t let something like a broken shoulder stop him from finishing the trek. The next year, he resumed his abandoned ride to make it the last 700 miles to St. Louis—and this time, he had company.
Another father reached out Justin through the foundation website, explaining that he, too, had recently lost his daughter to HLH. He asked if he could join Justin on his bike ride as his own form of therapy, and Justin agreed. Together, they made it to St. Louis—and the 700 Miles to Hope ride began in earnest.
“Initially, I wanted to do 500 miles,” Justin explains. “I thought 700 might be too long for everybody to do. But they kept saying no. We’re asking people to donate $1 a mile, so it’s gotta be 700 miles.”
These days, parents of HLH-diagnosed children bike alongside doctors, therapists, and chaplains who all work with HLH patients. Justin says that it’s a sort of healing journey for them—that it’s a healing journey for everyone.
“Most people, when they decide they’re going to come do this, they only think about the athletic part of this. When I ask them halfway through the week if the ride’s what they expected, I usually hear that athletically, yes, but they didn’t think through the camaraderie of the group, and how we all come together and use laughter to get us through the seven hundred miles.
“They say it’s the most amazing week of my life, count me in for next year.”
700 Miles to Hope has raised hundreds of thousands of dollars for HLH research, awareness, and patient care for the HLH Center of Excellence at CCHMC. To date, the Matthew and Andrew Akin Foundation has donated $850,000 to the center, with an additional $250,000 donated from this year’s bike ride.
What You Can Do to Make a Difference
No matter what, Justin says that it’s important to give back to the community, and that “I often hear from people that they don’t think they can make a difference, because think they need to do something big. But that isn’t the case at all.”
So, if you can’t join this year’s bike ride or donate, here are some other ways to support the cause.
- Become a regular blood donor to replace the units used to support HLH and other patients who require transfusions.
- Join the bone marrow match registry, Be The Match. Currently, the only complete cure for HLH is a bone marrow transfusion, and too few people are on the list. All it takes is a cheek swab to be registered at bethematch.org, and you’ll only be called up for a possible match.
- Volunteer. So many organizations—from the HLH Center of Excellence, to the Red Cross, to smaller charities in your neighborhood—suffer from a lack of manpower to accomplish their goals. If you can, consider giving your time as well as monetary donations to causes you feel passionate for and need help.
In the end, Justin and Kristin Akin work tirelessly to pay forward the efforts others gave their children. Even as their family continues to grow with a healthy 6-year-old son and his newborn baby brother, they never forget Andrew and Matthew—and hope to help other families suffering as they once did.