Entire family rallies for boys with rare blood disorder

Nick Ramirez, and Greg Bachkora were three of the 149 parishioners at Our Lady of the Presentation Parish in Lee’s Summit who swabbed DNA samples and registered as bone marrow donors on behalf of four St. Louis brothers with a rare genetic blood disorder. (Kevin Kelly/Key photo)

By Kevin Kelly
Catholic Key Associate Editor

KANSAS CITY — It’s what families do when one of their own needs help.

In the case of the extended Murry family, four of the grandchildren of John and Mary Margaret need help in fighting a rare blood disorder.

So from California to Illinois, the broad Irish clan — led by one of the youngest cousins — got busy in an effort to save the lives not only of their own, but of, perhaps, hundreds if not thousands of others.

Since February, in scores of bone marrow registry drives, the Murrys have put thousands of new names on the national bone marrow donor registry through DKMS, a organization founded in Germany and spred to the United States in 2004.

Still not finding the perfect match for the two oldest boys who will soon need a full marrow transplant, the Murrys know that they have found, through there efforts, two genetic matches for other patients awaiting marrow transplants.

But they won’t stop until their match is found. And even then they might not stop.

After all, said John Murry, a member of St. Thomas More Parish and retired president of Donnelly College in Kansas City, Kan., if they would take on Lucifer himself to save one grandchild, what is the work behind organizing bone marrow registry drives for four grandchildren?

Not much, if you go to places like Our Lady of the Presentation Parish in Lee’s Summit, site of the latest “Marrow for Murrys” registration drive.

The newly hired director of the parish Health and Wellness Ministry, Paula Berger, said she mulled it over for two or three seconds before giving the green light to Dolores Haith, first cousin of the boys’ father, to hold a July 22 drive there following Sunday morning Masses.

A total of 149 people joined the registry in just the three hour drive. And Berger invited the Murrys to come back later to catch more parishioners at the parish’s 5 p.m. Sunday Spanish language Mass.

“This was an easy one,” Berger said. “Our mission is to increase wellness and education in our parish and in our community, and this fits right it. It’s well organized and well run, which makes it really nice.”

It took each potential donor less than five minutes to fill out forms and provide the DNA sample from a cotton swab of the mouth. Once registered, donors will be placed on a call list in case they match a person on a 10,000-patient long waiting list for a marrow transplant.

By now, the Murry clan definitely knows how to run a bone marrow registry drive. It’s not just the grandparents, it’s a whole army of aunts, uncles, and cousins who have already organized scores in places from California, Texas, Illinois, Kansas and both sides of Missouri.

In addition to Presentation, bone marrow registry drives on behalf of the Murrys have been held at St. Patrick in Clay County, St. Andrew in Gladstone, St. James in Liberty, with more in the planning process on both sides of the state line, and talks underway to bring the drive to the campuses of Rockhurst and Avila universities.

It wasn’t so until last spring, when granddaughter Bridget McBee, cousin to the four Murry boys, heard a presentation by a DKMS representative at St. Louis University where she is a student, then got her Kappa Delta sorority to organize the first registration drive for the Murry boys on the SLU campus.

It was as if a lightbulb went off in the heads everybody related to the boys.

“Bridget was the one who started it,” Grandpa Murry said. “She showed the rest of us what to do. Before then, we had no idea what to do.”

It had been 21 years of not knowing since the birth of Sean, the oldest of Tim and Maggie Murry’s sons.

John and Mary Margaret said the doctors in St. Louis knew there was something terribly wrong when Sean was born.

“He was in stress,” John said. “He needed a blood transfusion like he was bleeding to death, but they couldn’t find out where he was bleeding and where it was going.”

He got that transfusion and spent three weeks in neonatal intensive care, where he seemed to recover.

But a month later, Sean began to fail again.

“That’s when they rushed him back into the hospital and diagnosed him. That’s when they found out he had an extremely rare condition,” John said.

The diagnosis was Diamond-Blackfan anemia, a condition in which the body fails to produce its own red blood cells.

How rare is it?

“I think they said Sean was No. 51 (among infants diagnosed with condition in the United States),” John said.

But doctors were hopeful. Although it is a genetic disorder apparently caused by a gene that his mother Maggie was carrying, there was no history of Diamond-Blackfan on her side of the family.

The doctors said that with a regimen of regular routine blood transfusions Sean could live a normal childhood and adolescence until the iron buildup in their bodies begins to take its toll on his organs. At that time, he would need a marrow transplant from a perfect genetically matching donor.

And the doctors told Maggie and Tim that the condition was so unlikely and rare, that they shouldn’t worry about having other children. In fact, they encouraged them. A sibling might be the perfect match for the marrow transplant Sean would need.

Four years later, Patrick was a perfect genetic match to Sean. Only he was born with Diamond-Blackfan which stunned the doctors, John said.

“They said it was like getting struck by lightning twice by standing in the same spot,” he said.

Seven years later came Danny, now 10, also with the same disorder. Then 8-year-old Timmy.

Danny and Timmy are being treated with a new steroid regimen. Both Sean, 21, and Patrick, 17, still undergo transfusions three times a week.

But the “Marrow for Murrys” bone marrow registry drives does have its downside, John said.

Both of the boys’ parents — and especially their mother — have made extra efforts to make sure their sons’ lives are as normal as possible.

Growing up, they did all the guy things, including sports. Sean is a student at Lindenwood University, and Patrick is a high school senior, who developed an interest in bowling.

To this point, their lives have been so normal that mother is just like any other mother riding herd on four boys.

“Maggie’s favorite things to say to them is ‘Life isn’t fair,’ and ‘No excuses,’” John said.

But at the same time, the marrow drives remind the boys that the clock is ticking.

“It’s a mixed blessing,” John said. “On one hand, they are so thankful that so many people are trying to help. But on the other hand, it reminds them of what they are up against.”

But of course, for the matriarch and patriarch of the Murry Clan, the biggest blessing could be seeing how their family, and all their friends, have rallied.

“That’s been amazing,” Mary Margaret said. “Children, grandchildren, nieces, nephews. It teaches me how much power people have when they lean into a project.”

For continued updates on “Marrow for Murrys” bone marrow registration drives, see www.marrow4murrys.com. For more information on the efforts of DKMS Americas to expand the national donor registry, see www.dkmsamericas.org.

 

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Tuesday
November 21, 2017
Newspaper of the Diocese of Kansas City ~ St. Joseph