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Community Corner

Ballwin Family Are Official "Heroes" of Charity Bike Ride

The Akin family is part of the Ronald McDonald House with the hopes of helping their son, Andrew, who has a rare immunodeficiency condition.

When riders set off on the second annual Ronald McDonald House Charities Bike Ride Saturday, the Akin family of Ballwin will serve as official “heroes” of the ride. They have established their own foundation to further the cause.

Those parents who have had seriously ill children know what a helpless feeling that is, made worse, if possible, by having to be separated from that child.

The Akins know firsthand how that feels.

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In 2007, at just 10 weeks old, their son, Andrew, was diagnosed with a rare immune deficiency called Hemophagocytic Lymphohistiocytosis (HLH) and a bone marrow transplant would be needed. He underwent his first transplant in December 2007 at St. Louis Children’s Hospital.

When this transplant was not successful, Andrew had another. When this one failed, the family transferred him to Cincinnati Children’s Hospital Medical Center to be under the care of a world renowned HLH expert.

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Once at the hospital, Andrew underwent his third transplant and additional tests revealed a rare genetic mutation caused his HLH. Doctors recommended testing the Akins’ 4-year-old, Matthew, for the same genetic defect.

“Just when we thought things couldn’t get worse, we were told that Matthew also carried the mutation,” Kristin Akin said. “It would be a matter of time before he was exposed to a virus that would trigger HLH.”

Doctors recommended that Matthew undergo a bone marrow transplant immediately, despite still appearing healthy. With only one bone marrow match in the donor database, doctors wanted to make sure the bone marrow cells were given to Matthew while available.

Suddenly, Andrew developed severe pulmonary complications. He lost his battle on September 5, 2009—just two weeks after his brother underwent his bone marrow transplant. Matthew’s journey continued to be even more challenging and difficult than his brother’s. After eight months, Matthew lost his battle on May 1, 2010.

Before Matthew and Andrew got sick, Kristin had volunteered at the Ronald McDonald House on West Pine Boulevard. When their children were patients at Children’s Hospital, she used the facility to shower or grab a snack. She now volunteers at the West County Ronald McDonald House at St. John's Mercy Children's Hospital where she greets new families and helps them adjust.

Last September, she and Justin adopted a baby boy, William, who has given them the strength to go on with their mission, the Matthew and Andrew Akin Foundation founded to provide resources for children with HLH and families going through the transplant process.

The foundation is raising money to build a 55 unit, long-term apartment building similar to the Ronald McDonald House. The house will be adjacent to the center where their boys had their bone marrow transplants.

“Everyone agrees that their worst nightmare is having a sick child. Giving the parent a clean bed, a hot shower and a home-cooked meal seems like a simple thing, but it means the world to them," Kristin said.

“When my kids got sick, I felt very isolated, and I found comfort with the other parents whom I met in the hospital. They know what you’re going through. You can sit and share the events of the day. They can understand the lingo, the stresses and the triumphs,” she said.

“They say infants and animals can pick up on the stresses,” she said. “If you can take a shower, get a good night’s sleep, have breakfast, and head over the hospital, your mind will be clearer, and you can be more of an advocate for your child. You’ll have energy to ask the doctor the right questions and be involved in your child’s care. You won’t be tired from sleeping in the waiting room or car or driving two hours at night. That makes a huge difference, and I think it helps the child’s recovery.”

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