STANDISH – On Saturday in Standish, over 60 donors were registered and $2,000 was donated to the largest bone marrow donor center in the world, DKMS, thanks to the work of a donor, a local recipient, and a loving community.
In 2006, Aaron Vilhauer, just 18 and a student in Las Vegas, heard about a bone marrow drive for a University of Nevada medical student who was suffering from leukemia and needed a bone marrow transplant to live. Figuring the student would go on to save lives while in the medical field, Vilhauer went to the drive and registered as a donor, though it turned out he was not a match.
Nearly one year later and 3,000 miles away, Martha Conley of Standish learned her then-11-year-old son Joshua had cancer for the second time and would need a bone marrow transplant.
“It was just devastating,” said Conley. “You hope that there is a match, but you just don’t know.”
Soon after, Vilhauer received an e-mail from DKMS stating that he was a match for the Standish boy. The subsequent transplant saved Conley’s life, an act that was celebrated Saturday with the donor drive at Standish Town Hall, held in recognition of the three-year anniversary on Vilhauer’s gift to Conley.
The focus of the event was to raise awareness and sign up donors. Unfortunately, not every story has a happy ending like Conley’s.
According to DKMS America only four in 10 people will receive a marrow donation due to the complexity of matching marrow and the lack of donors.
“Six out of ten people will not receive the transplant they need to live,” said DKMS donor recruit Kelly Taylor. “The more donors we have the better chance we have to save someone’s life.”
As Vilhauer’s case proves, signing up as a donor can often pay off for someone, even years down the road.
“I had sort of forgotten I was even on the list,” said Vilhauer. “Even though I was a little nervous to have the procedure, I didn’t think twice about it.”
Once Vilhauer agreed to be a donor the Conleys were notified that DKMS had found a match and would be able to give Joshua the transplant he desperately needed.
“I cannot even describe how I feel about Aaron,” said Joshua Conley. “There are no words to even thank him. I am so incredibly grateful and I can never repay him for what he has done.”
According to Vilhauer, the procedure was simple and left him with relatively no pain.
“I felt a little stiff after; it was a little achy to sit down,” said Vilhauer, adding with a laugh. “I went on a road trip a few days after, which probably wasn’t the smartest idea.”
Vilhauer had the most common procedure for bone marrow donors, which consists of doctors extracting a small amount of bone marrow from the hip bone with a needle. The patient is sleeping during this procedure and the marrow is replenished by the body within a few weeks.
Although easy for Vilhauer, the procedure was extremely difficult for Conley. Before he could receive healthy marrow, his compromised marrow had to be completely destroyed, leaving his immune system susceptible to damage. Once the marrow transfer was completed he spent nearly two months in the Boston Children’s Hospital and another three weeks in the Ronald MacDonald House close to the hospital. He then spent a year in quarantine in his home.
“That was awful,” said Conley’s mom. “He couldn’t go to school or visit friends. At Christmas our house is usually full but we couldn’t risk him catching a cold or virus. It was very hard, but it was worth it.”
One year after the transplant, DKMS arranged for the two young men to meet at a gala in New York City. They were introduced on stage in front of hundreds of people.
“I was so excited to meet him,” said Joshua Conley. “It didn’t even seem like anyone else was there. “
Vilhauer agreed.
“It was amazing,” he said. “I can’t imagine not meeting him.”
The Conley family now has a strong bond with Vilhauer, and to celebrate the three-year anniversary of Vilhauer’s donation the group wanted to do something for others.
“We know we are lucky and that some people don’t get this chance,” said Martha Conley. “That’s why we are here today. So many people have to wait to get a match and sometimes it doesn’t happen.”
While Vilhauer worked the information station and family and friends worked the registration, donation, and check-out tables, Joshua worked the room, thanking people for donating and shaking hands.
“He’s doing great,” said Taylor. “The whole family has done a great job setting up this donor drive. It’s so easy to register to be a donor.”
Standish resident Sue Parmenter, who signed up to be a donor, agreed.
“It seems like a simple thing to do to save someone’s life,” she said, referring to the cheek swab donation process. “If that is something I can give, than I certainly will.”
For people who could not make the event but wish to register and become part of the donor list all they have to do is call DKMS or visit its website.
“People wanting to be a donor can contact us and we will send them an information packet and cheek swab kit that they do in their home and mail back to us,” Taylor said. “It only takes a few minutes but could save someone’s life.”
Aaron Vilhauer, left, has become close with the Conley family, including 14-year-old Joshua, father Steve, mom Martha, and brother James, since Vilhauer donated bone marrow to Joshua, saving Conley’s life. On Saturday, the family and Vilhauer held a bone marrow donor drive in Standish to celebrate the three-year anniversary of the transplant. (Staff photo by Heidi MacVane)
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