Every new mom and dad believes that their child is “one-in-a-million,” but for the Akin family of suburban St. Louis, that designation for baby Andrew was devastating.
When he was about 10 weeks old, Andrew’s mom, Kristin, noticed that though he wasn’t acting sick, he was spitting up every other bottle. She thought it was the wrong kind of formula, until one morning he woke up jaundiced head to toe.
She took him to the doctor, and within 24 hours, Kristin and her husband, Justin, were told that their beautiful little boy was in liver failure and had less than a 50% chance of survival. The family spent agonizing hours and days with doctors, trying to find out what was wrong with Andrew.
Finally, he was diagnosed with a rare immune system disorder called hemophagocytic lymphohistiocytosis (HLH). HLH affects one out of every million children. The good news is that HLH can be cured with a bone marrow transplant.
Since his diagnosis, Andrew has undergone three bone marrow transplants, the last one in March 2009. Andrew is doing well today after his third transplant.
However, Andrew’s parents learned that Andrew's older brother Matthew also carries the same rare genetic mutation that caused Andrew’s HLH. Even though Matthew is doing fine so far, he also needs a bone marrow transplant, because the disease could begin to affect him at any time. It was hard for Kristin and Justin to make the decision to go forward with a transplant for Matthew, who is outwardly a perfectly healthy, vibrant four-year-old. But a matching donor has been found and they are planning Matthew's transplant to take place this summer.
Despite all they have been through, the Akins remain strong and optimistic that they will beat this disease, and they continue to spread the word about the enormous need both for donors and for contributions to support Be The Match.
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