The Allums family is looking for a bone marrow match for their oldest son. The same match could later help their youngest daughter, who shares the same rare form of anemia as her brother. Courtesy Cole Prine

Caroline, 11, Elizabeth, 3, Jon Thomas, 13 and James Christopher Allums, 20, do everything as a family. James Christopher and Elizabeth both have a rare medical condition. Their mother, Ellen Allums, said they all go through the process together and support each other with faith and love.(Photo: Courtesy)

Chris Allums was raised in Shreveport. He attended Captain Shreve High, and his family still visits his mother there. He said the community is special to his family.

He and his wife Ellen have four childrenJames Christopher, 20;Jon Thomas, 13;Caroline,11;andElizabeth, 3.

James Christopher and Elizabeth have Fanconi anemia, a disease that affects the bone marrow's ability to produce blood. Bone marrow or blood stem cell transplants are considered the best treatments, andthey have not found a match for either child.

The disease is genetic. According to theNational Organization for Rare Disorders, the incidence rate is 1 in 136,000 births. Ellen said her children are two ofsix in Louisiana affected by FA.It has a variety of symptoms such as fatigueand can lead to bone marrow or organ failure. Ellen and Chris said FA patients are 500 times more likely to develop some cancers, such as leukemia.

James Christopher was diagnosed 12 years ago and told he had about 18 monthsto live. The family was told he must received a bone marrow transplant. He is subject to constant screenings to monitor his blood and check for cancers.

Ellen said they immediately started praying for a miracle. They planned to grow their faith and help as many families as they can along the way until a match is found.

More than 16,000 people have been added to the worldwide bone marrow registry as a result of drives held on behalf of the Allums. Ellen said they know of at least 41 lives that have been saved because of those efforts, and they're asking more people to commit to donate.

From 9 a.m. to 3 p.m. June 24, Tiger Rock Martial Arts of Shreveport, 1409 E. 70th St., Shreveport, will host a bone marrow drive to help the Allums find a match.

Want to go?

Ellen said the process to donate blood stem cells, which is the most common donation method, involves a needle in each arm for four to six hours.

"It's not even a surgery. It's not like giving a kidney or a lung or a heart, even, but the benefits are that strong. It can truly save a life, but yet all you have to do is like giving blood," Ellen said.

To test for a match, she said, it's less of a commitment. It takes about five minutes to fill out paperwork and provide a swab from inside the cheek. Anyone 18-55 in good health can register. A month after testing, people will get a phone call to confirm their position on the registry.

A bone marrow transplant won't cure someone with FA, but it can help prolong life.

One donor, once found, could help both children.Elizabeth's blood counts have been OK, but doctors have said James Christopher has an immediate need for a transplant. DNA needs to be close to an exact match, and many families find a relative who can donate.Elizabeth is a 100 percent match, but she's ineligible because of her FA.

James Christopher Allums, 20, holds his sister Elizabeth Allums, 3. The siblings both have a rare medical condition called Fanconi anemia.(Photo: Courtesy)

If a match is found, the entire family would move to New York for six to eight months. The couple did their homework on hospitals that specialize in the disease and settled on Memorial Sloan Kettering Hospital's cancer center. It had the best survival rates, and they've been going for 12 years.

Ellen said the a bone marrow recipient with FA will have to go through chemotherapy for two weeks to kill off the patient's natural bone marrow.

"When the cells are dead, then they receive someone else's bone marrow. It's a liquid, it looks just like an IV, and they lie there and you just pray to God that it's going to take," she said.

After the transplant, the patient is in isolation for 30-40 days. They stay at the transplant hospital for six to eight months and keep a medical mask on for one year. Chris said you hope graph vs. host disease isn't an issue.

Chris said it's important for people to get registers and commit to helping if a match for anyone is found. He said the life you end up saving might be your own. They know of at least one woman who found a quick match when she needed a donor because she had already registered.

FA patients can require blood and platelet transfusions, after which they may become dependent and need additional rounds, which would require a bone marrow transplant quickly.

James Christopher received his first blood transfusion earlier this year. Chris was the donor.

A few weeks ago, James Christopher's counts came back dangerously low. The family had to skip travel to a relative's wedding in Colorado, but Chris said they dressed up, bought a wedding cake and arranged a viewing via Skype. They made lemonade out of lemons, he said.

Chris can donate again in three week, and James Christopher is opting not have his counts check for now.

Want to register?

Order a testing kit online atdkms.orgorbethematch.org.

Online

CheckThe Friends of James Christopher and Elizabeth Allumson Facebook or visitcaringbridge.organd searchJames Christopher Allums.

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