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A Mother's StoryThis is the incredible story of siblings, Alexandra and Matthew Pearl, both diagnosed with Fanconi anemia, a rare and potentially fatal blood disorder. They both needed marrow transplants for a second chance at life. They do everything in life together; now even this. You need to have javascript enabled to view this video
Alex and Matt have a second chance at life because of two incredible marrow donors. In the words of Alex and Matt's momI’ll never forget the day Alex was born: April 6, 1995. She was four weeks early and everything went wrong. I never heard her cry and obviously thought the worst. The doctors told me she may never walk, talk or eat. They didn’t expect her to make it. I told her to be a fighter and prove them all wrong.I had to believe she was born for a reason and would survive to teach us all. She did. Matthew arrived twenty-one months later. The two of them are inseparable. Our lives changed dramaticallyThen came another day I will never forget: December 5, 2000. The day Alex was diagnosed with Fanconi anemia. The disease is genetic and it was confirmed later that Matt also had Fanconi anemia. The doctor told us that Alex and Matt would both need marrow transplants. Our search for matching donors began.Alex has a donor, but not MattWe received news that there was a donor on the National Marrow Donor Program Registry with the same tissue type as Alex, but not for Matt.Alex received her transplant in May 2001. We continued searching for a match for Matt. There was one donor on the Registry who was a possibility for Matt, but the donor’s tissue type was not as well matched as Alex’s. For six years we worked to add new donors to the Registry, but still did not find a more closely matched donor for Matt. Then Matt grew sicker. We had no choice but to get him to transplant. In June 2006, we moved forward with the donor found on the Registry six years earlier. Matt’s recovery process was difficult and we almost lost him many different times. Two incredible life-saversThroughout both of my children’s transplants I continued to wonder about the two incredible people who donated marrow to save their lives. We were able to communicate anonymously with Alex and Matt’s donors. Then, on Thanksgiving Day 2007, we received a wonderful letter with Matt’s donor’s contact information. I could hardly read the letter through my tears of joy. It was uplifting news and we were all very excited. However, I was sad for Alex as she quietly cried wanting to hear from her donor as well.At Christmastime the same year, we received word from Alex’s donor. What an amazing gift for Alex. We have since been in touch with both donors and they have accepted our invitation to meet Matt and Alex for the first time this Mother’s Day weekend. (Remember, I said these two do everything together.) Together, their will to live is catching and their fighting spirit is an example for us all. As Matt says, “I never want anyone to suffer like we did if I can make a difference.”
Alex and Matt hope that by sharing their story more people will be inspired to join the NMDP Registry. So the story of thirteen years of “why us” finally comes full circle. Spring is about re-birth and new beginnings as Alex and Matt start this fresh chapter with new “mothers” in their lives (both donors are also mothers). Their story of love, hope and immeasurable faith will live in many hearts forever. |
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