2017-07-14 / Neighbors

Holding out hope for a match

Bone marrow transplant could cure Simi boy
By Melissa Simon

ALL SMILES—Above, from left, are siblings Jeremy, Gabriel and Hallie Allen. Jeremy, 1, also at right, has an impaired immune system and a rare anemia that requires him to get blood transfusions every three weeks. His parents are hoping to find a bone marrow donor that could help cure the anemia. ALL SMILES—Above, from left, are siblings Jeremy, Gabriel and Hallie Allen. Jeremy, 1, also at right, has an impaired immune system and a rare anemia that requires him to get blood transfusions every three weeks. His parents are hoping to find a bone marrow donor that could help cure the anemia. When Jeremy Allen was born July 5, 2016, he seemed to be a healthy baby boy.

But a week later, Simi Valley residents Elspeth and Chris Allen learned their infant son had severe combined immunodeficiency (SCID), a genetic disorder that results in an impaired immune system. Although Jeremy’s immune system was working, it was very weak.

After undergoing further tests at Children’s Hospital Los Angeles, Jeremy tested positive for diamond blackfan anemia, a rare congenital disease that affects bone marrow, making it difficult for the body to produce red blood cells.

In Jeremy’s case, he makes very little of his own blood, requiring him to get regular blood transfusions in order to survive.


Photos courtesy of the Allen family Photos courtesy of the Allen family The Allens were heartbroken by the news.

“We had no idea what SCID even was and there was no family history of it. Then to hear that Jeremy also had DBA was just devastating, and we were shocked. I mean, the odds of getting DBA are 1 in 130,000, so it’s extremely rare,” Elspeth Allen, 33, said. “We kept waiting for the doctors to tell us he was fine and we could go back to our normal lives. But that never happened.”

Jeremy spent the first several months of his life in and out of CHLA undergoing tests and blood transfusions. Those months were especially difficult for the Allens’ two other children, Gabriel and Hallie, then 5 and 3, respectively.

“I remember when Jeremy was born, Gabriel had been coughing for a few weeks and he couldn’t be around Jeremy, so he had to stay with his grandparents. And Hallie ended up staying with grandparents too,” Allen said. “They couldn’t be around the baby without a mask, and they couldn’t touch him or kiss him or play with his toys. That created some problems at first, but they all adore each other now.”

Donor needed

Since his diagnoses, Jeremy’s anemia has persisted, his mom said. The 1-year-old needs transfusions every three weeks.

Allen said about 17 percent of DBA patients go into spontaneous remission and begin making their own blood.

“But we don’t anticipate that happening for Jeremy, although we’d love to see that and have been praying for it,” she said.

The two most common treatments for DBA are blood transfusions and steroid regimens, the latter potentially having serious negative effects on the body, Allen said.

The other option is a bone marrow transplant, which can cure Jeremy’s DBA.

Joyce Valdez, spokesperson for the City of Hope’s Be The Match Marrow Registry, said finding a perfect match can be difficult.

“I’ve been a donor for 20 years and haven’t been asked to donate yet,” Valdez said, adding that the search becomes especially diffi-cult due to the 53 percent drop-off rate among donors. “Many donors either don’t want to give anymore or just aren’t able to.”

The best chance for a donor match is a sibling. But in Jeremy’s case, neither of his siblings is a match. He also struck out in finding a match on the registry.”

“With the registry, we’re looking for as close of a DNA-level match as possible, which looks at tissue typing,” Valdez said.

About 90 percent of the 13.5 million U.S. donors in the registry are Caucasian like Jeremy, which should have given him a high chance of finding a match, Valdez said.

“Unfortunately, there was no match for him on the registry either,” she said.

Elspeth Allen suspects part of the reason there was no match for Jeremy in the registry is because he has some Native American blood and there tend to be fewer donors in minority groups.

“We felt hopeless when we got the news May 30 because this could’ve been the opportunity to give Jeremy the chance at a normal life,” Allen said. “Now it just feels like we’re waiting for him to get (something worse).”

Despite the boy’s weakened immune system, Jeremy seems to be able to fight off “run-of-the-mill viruses" that aren’t too serious, which has been a good thing,” Allen said.

Through it all, the boy remains a “cheerful, sweet, tough baby with a go-with-the-flow disposition,” his mom said.

“We call him our Stoic the Small, after Stoic the Vast in ‘How to Train Your Dragon,’ because he’s so strong, and I think that’s going to make him a better person. I have no idea what will happen with his DBA treatment, but I’m holding out for a match because I’d like to cure it.”

To become a donor, visit bethematch.org or call Be The Match at (626) 218-8483.

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