Matthew and Andrew's Story
Andrew Preston Akin was born on June 5, 2007. At 10 weeks old, he became very sick and almost died from what appeared to be liver failure. However, we soon learned that the cause was an immune deficiency called Hemophagocytic Lymphohistiocytosis (HLH). Andrew was immediately started on the HLH 2004 protocol consisting of chemo and steriods. Meanwhile, we searched the national bone marrow registry for a match because the only cure for familial HLH is a bone marrow transplant.
In December 2007, almost 4 months to the day he first became hospitalized, Andrew underwent his first bone marrow transplant with umbilical cord cells at St. Louis Children’s Hospital. Sadly, Andrew did not fully engraft and we were then told he would need a second transplant to try and save his life.
In May 2008, Andrew had his second bone marrow transplant, this time using bone marrow from an anonymous donor. Unfortunately, this transplant did not work either, and at this point, we decided to transfer his care to Cincinnati Children’s Hospital Medical Center (CCHMC) to be under the care of the world-renowned HLH expert, Dr. Lisa Filipovich.
Andrew underwent his third and final bone marrow transplant in March 2009. Upon transferring our care to CCHMC, additional tests were done on Andrew, and it was learned that the cause of his HLH was from a very rare genetic mutation: X-linked Lymphoproliferative disorder #2 (XLP-2).
On the recommendation of the doctors, we had our other son Matthew tested despite the fact that he was a healthy 4-year-old. Just when we thought things couldn’t get worse, we were told that Matthew also carried the mutation, and it would be a matter of time before he was exposed to a virus that would trigger HLH.
The doctors recommended that Matthew’s best chance for survival was to undergo a bone marrow transplant while healthy. If we did not take him to transplant, they told us that when the disease presented itself it could be fatal. They might not be able to get the disease under control and get him healthy enough to go through the transplant process. Plus, there was only one match on the National Bone Marrow Registry for Matthew. If something happened to that person and Matthew got sick, we would have no one to help save our son's life. At the time, Andrew was six months post-transplant and doing reasonably well. So in August 2009, Matthew underwent a bone marrow transplant at CCHMC, which made for our fourth bone marrow transplant in two years between our two sons.
Then, completely out of nowhere, Andrew developed severe pulmonary complications and he lost his battle on September 5, 2009 while his brother was only two weeks post-transplant.
Matthew’s journey continued to be even more challenging and difficult than his brother’s, and after eight long, grueling months, Matthew lost his battle on May 1, 2010.
We realize there is no panacea or perfect place, however, despite the outcome of our boys we truly believe that CCHMC is the best hospital in the world for a pediatric bone marrow transplant, especially for immune deficiencies. Recent renovations has allowed the hospital to expand their bone marrow transplant unit to 32 rooms. The children there come from all over the world. We just wish we had started our journey at Cincinnati Children's Hospital.
We’ve lost two wonderful little boys that will be missed forever. Our mission now is to help the families that will have to deal with this horrible disease in the future.