A former Manhattan family will be returning this weekend — and not just to show their support for the Wildcats. They are also here to encourage the community to get put on a national bone marrow registry.
“We knew it would be a big weekend,” said Tim Murry, father of the family. “We chose this weekend in hopes that more families will be back in town who remember us.”
Murry grew up in Manhattan, attended local schools including the now-closed Luckey Catholic High School and Kansas State University. He started a family with his wife, Maggie, before moving to St. Louis. But their new arrival, a son named Sean, was born with a rare and deadly anemia called Diamond-Blackfan anemia.
The anemia is a congenital disease that affects the body’s ability to produce red blood cells. Those cells contain iron and are responsible for delivering oxygen to the rest of the body.
To treat the condition, Sean has been receiving whole blood transfusions every three weeks since birth. Three more sons followed, and all of them have Diamond-Blackfan anemia Sean is now 21 years old. Patrick, the second, is 18 and like Sean has required blood transfusions since birth. The youngest two boys, Danny, 11, and Timmy, 8, have had success with steroids, but Murry said that might not last.
“The disease is funny,” Murry said. “Sometimes steroids work, sometimes they don’t, or they just stop working for no reason.“Red blood cells develop in the bone marrow, so the only hope for a permanent cure is a bone marrow transplant. Then the boys would no longer require transfusions or steroids. Murry said the doctors told the family the transfusions are harmful as well as helpful. Because the boys cannot produce blood on their own, the transfusions cause a buildup of iron in their bodies, which eventually could cause their internal organs to become damaged and shut down. Sean is in the most danger of this occurring.
“Doctors said when the boys get into their upper teens, it is time to start seeking a donor,” Murry said.
Finding a match has proved difficult. Sean has found a match three times, but for one reason or another, those matches fell through. Murry said they found the first donor almost four years ago for Sean, but the donor backed out at the last minute.
“We were about a week out and the donor changed their mind,” Murry said.
Two years ago, a second possible donor was found, but the person turned out not to be a match at all, he said. Then, about a year ago, a third match was found in England, but again the match fell through.
Murry said that the matching process is done in confidence, and even though people register, they have the choice not to go through with the transplant.
Other factors include the health of the donor at the time of the transplant, he said.
That means that any number of things can cause the match to fall through.With three failures to find a suitable donor, Murry said time is running out for his oldest.
“If you get to the point where the odds of dying are greater with the transplant versus waiting five years due to the disease, then you just wait for the disease,” Murry said. “Probably over the next five years, it will really start to show the damage done to Sean.“Sean is scared of the risks involved in the procedure, Murry said, “but he knows he’s on a dead-end road.”
Murry said only about 2 percent of U.S. residents are registered, leaving 98 percent of the population as potential donors. The family thought there was little hope in finding a match for the boys until Murry’s niece started college and joined a sorority.
Her decision that her philanthropic project would be bone marrow donor registration drives spurred the family into action. Murry said he did not realize how easy it was to hold a community event to get people to register. He said DKMS America, a national bone marrow registry, provides everything they need.
“They provide the fliers, kits and banners,” Murry said. “All we had to do was find a place large enough to hold the drives.”
Murry said the family has held more than 40 drives in the St. Louis area since they started about a year ago.
Then Murry decided to see if he could recruit his former high school classmates for help.
He sent out messages on Facebook asking if anyone would be interested in doing the local legwork in Manhattan to organize a registration drive.
As a result, Jamie Hill stepped up to the challenge.
“I also volunteered my mother who has been contacting the local churches,” Hill said. “We have also been trying to get the word out through friends and family.”
Hill not only found three local Catholic churches to volunteer the space to hold the events, she also recruited fraternity members to volunteer at the events and put up fliers around campus.
As for registration, the procedure is simple.
Anyone ages 18-55 who is in good health comes to the event, answers a few questions and then gets a cheek swab.
At that point, the swabs are sent to DKMS to see if that sample matches any one of the 10,000 patients seeking a donor match. St. Isidore’s Catholic Student Center, 711 Denison Ave., will be open from 9 a.m. to 1 p.m. on Sunday offering cheek swabs to community members wanting to register. Seven Dolors and St. Thomas More Catholic churches will hold their drives from 8 a.m. to 12 p.m. on Sunday.
“It is a two-edged sword, because it is great to see the community come together,” he said. “It’s uplifting. But it also brings awareness of the seriousness of the disease.”