Matthew and Andrew’s Story

Andrew Preston Akin was born on June 5, 2007. At ten weeks old, what initially started as severe jaundice quickly landed us in the Pediatric Intensive Care Unit. Within hours, we were told that Andrew was in liver failure and had a 50% chance of making it through the night. Thankfully, Andrew did make it through the night. However, for the next two weeks the Hematology/Oncology, the Infectious Disease and the liver team went round and round with tests, biopsies, thoughts and potential diagnosis. And then on September 7, 2007, our world was officially turned upside down when we were informed that Andrew actually had a rare immune deficiency called Hemophagocytic Lymphohistiocytosis (HLH), and the only cure is a bone marrow transplant.

Almost four months to the day, our then six-month-old son underwent his fist bone marrow transplant in an effort to save his life. He was started on the standard protocol for HLH (HLH 2004) and initially responded very positively. But, suddenly, his HLH came roaring back. Not only did we have to move up his transplant, we had to go with our second choice, umbilical cord cells, as there was not a suitable bone marrow match on the registry at the time. Grateful and optimistic that this was the end of HLH and the beginning of a new and healthy Andrew, we were devastated to learn that two months after his transplant, that it did not work, and he would need another one.

And so we continued: with steroids, chemotherapy and a host of other drugs, all the while keeping him in a bubble away from any and all germs. Meanwhile, the search began again to find Andrew the best possible unrelated, matched bone marrow donor. Excited that marrow was going to be the answer to our prayer, our sweet Andrew Bear underwent his second bone marrow transplant right before his first birthday. Sadly, almost a year to the day of his diagnosis, we learned that again, for various reasons, his transplant was not a success. It was at this point we decided to transfer our care to the world-renowned HLH expert, Dr. Lisa Filiapovich, and her team at Cincinnati Children’s Hospital Medical Center.

Upon transferring our care, we learned several things about Andrew’s disease, his treatment up until that point, and the most important thing: the cause of his HLH was among the newest genetic mutations – X-Linked Lymphoproliferative Disorder #2 (XLP-2). Because it is X-linked, the doctors immediately tested me and our other son Matthew. And so, on my 34th birthday, I received among the worst news in my life: not only was I the carrier, but my healthy 4-year old also carried the mutation, meaning it was only a matter of time before he, too, would get HLH.

After countless discussions with the team of experts, we weighed the pros and cons of taking Matthew into transplant now while healthy or waiting. Meanwhile, we prepared Andrew for his third bone marrow transplant in less than two years. And somehow, six months down the road as we were living together in Cincinnati fighting for our two sons, Andrew developed severe pulmonary complications that ultimately took his life on September 5, 2009 at 27 months old in the Pediatric Intensive Care Unit. With Matthew just two weeks post transplant, we thought life could not get any worse, but somehow, eight short months later, it did. Our first-born son, Matthew Man, passed away in the same PICU on May 1, 2010. He was only 5 ½ years old.