SOUTHWICK – Four thin sticks with white cotton tips separates Alex Snow from an anonymous donor. The donor could provide a biological weapon to defeat Aplastic Anemia, a rare disease that has robbed Snow’s bone marrow of life-sustaining blood cells.
Last Saturday, friends, family, and strangers, from near and far, streamed into the Southwick Community Episcopal Church on College Highway last Saturday morning to have their DNA tested for a match. Their results will be entered into a national bone marrow database.
Snow was a sophomore at Southwick-Tolland Regional High School when he was first diagnosed with Aplastic Anemia. Now 19-years-old and a student at The University of Connecticut at West Hartford, his options to control and defeat the disease are running out.
Alex needs a bone marrow transplant. He needs a match with an anonymous donor in the National Marrow Donor Program database.
Pamela Karadimas, his mother, said he has good days and bad days combatting the immune disorder. He has been hospitalized a number of times and his immune system is suppressed. Alex is a regular patient at Connecticut Children’s Medical Center.
He receives blood and platelet transfusions on a regular basis. “With his illness the bone marrow stops making the cells,” said Karadimas. “But it’s a fight. It’s definitely, definitely very hard for the entire family.”
Simple ailments for most persons can put him in the hospital. She has only met one other person with the disease.
Before Alex became ill, she worked in pediatrics nursing for 15-years and knew something about the disease and the bone marrow registry.
“When he was first diagnosed with Aplastic Anemia, though, that was the time when it really hit me, that this could happen to anybody,” said Karadimas. “I vowed from that point on that I would do everything in my power to get bone marrow drives, to do everything I could, to know that I’ve done my best.”
Even if a match is found and Alex does receive a bone marrow transplant, there is always the chance of rejection, complications, and infections.
She said the biggest misconception about bone marrow donation is that the donor has to be deceased. She said if the bone marrow does not take the first time, the doctors can always go back to the original, live donor and get more bone marrow.
The body replenishes the donor’s bone marrow within a few days. As long as the donor stays healthy, the person can be a future source of healthy blood cells. “It’s a minor procedure and a little painful, but if that’s the least, I would take it,” said Karadimas.
Donors have a choice between a general or a local anesthesia during the bone marrow extraction. Even that becomes relatively painless.
“It’s a gift of life. You’re letting somebody live the life they were meant to live,” said Karadimas. In this case her son’s life, who some day hopes to be a pediatric oncologist.
One thing that has changed in the past few years is the test itself. Not a needle could be found anywhere at the drive site. Potential donors filled out a medical-history form and proceeded to a table for a short interview with a volunteer.
The volunteer then handed over a swab kit and instructed the potential donor to gently scrap the four quadrants inside the mouth. The swabs were placed back in the kit and sealed in an envelope with a special bar code attached.
Once a DNA test is performed on the samples, the information is entered into a national database. A nominal fee was requested of each person tested, as the church and area organizations deferred much of the cost.
Rebecca Hart, Chair of the Southwick Community Coalition and church member, said the coalition addresses a number of needs in the community. “There was a family (Karadimas’) who had a child who needed a bone marrow transplant.”
She said people lined up outside the church to be tested before the doors even opened.
“We had ten or twelve people before we even started. The response has been overwhelming and immediate how this community reacts to things when there’s a need. The community really steps up and we’re seeing that. It’s evident today with all the people who are here,” said Hart.
For more information on the National Marrow Donor Program and to locate a bone marrow drive site, go to: http://www.marrow.org.