Be The Match Feature Story - It all started in January 2011. Ben, then three-years-old began to experience severe bruising, and a trip to the doctor found that he had low platelet counts. Ben was diagnosed with a disease called congenital amegakaryocytic thrombocytopenia (CAMT), a rare inherited bone marrow failure disease in young children where the bone marrow no longer produces platelets or megakaryocytes, meaning that if the child begins bleeding—his or her blood will not be able to clot. Ben’s parents, Katy and Todd quickly discovered that his best chance at survival would be a marrow transplant. They worked with their transplant physician to find their donor who was listed on the Be The Match Registry®.
The Search for a Match
After just two months, the search for a matching donor was amazingly successful. “Our doctor found five perfect, unrelated matches through the Be The Match Registry.” In June 2011, Ben received his transplant at Children’s Hospital in St. Louis, Missouri. While the pre-transplant conditioning was described by his mother, Katy as “very grueling, but manageable” the actual transplant was “beautiful, Ben slept through the entire process.”
The First 100 Days
The first 100 days after transplant are critical – recipients are at risk for various complications, such as infection, graft-versus-host disease (GVHD)and even graft failure or rejection. Thankfully for Ben, while he experienced some minor infections and a few rashes, he never developed GVHD. The first 100 days were “Difficult and intense because we followed the regulations and doctor’s advice exactly,” said Ben’s mom, Katy, “but we had excellent family support and a good sense of humor and optimism.”
Adjustment to “Normal” Life
When Ben returned to school, he had some difficulty adjusting to school life and socializing with the other children, “because of what he went through.” But now, Ben is an outgoing, determined and intelligent boy who enjoys school and his new friends.
Today, life is back to normal for Ben and his family. “I love watching my son enjoy his life and get to do all the normal things five-year-olds do,” said Ben’s mom, Katy.
And as for Ben’s donor? “We exchange emails and are friends on Facebook. Though we live so far apart, it was amazing to learn his in-laws live only 45 miles away from us!” said Ben’s mom, Katy. Ben’s family hopes to one day meet his donor in person to say “thank you.”