The Snyder family, father Isaac, 4-year-old Holly, baby Harvey and mother Mary, pose for a picture during Christmas at the Akron Children’s Hospital. Harvey was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH) shortly after being born in February and has been receiving treatment at the Akron Children’s Hospital. The hospital made an exception to their cold and flu season protocol, which doesn’t allow children under the age of 12 into rooms, to allow the family to spend the holiday together. (Photo Provided)

MARIETTA — When Harvey Snyder was born in February, his parents Mary and Isaac had no idea the health challenges their newborn son would face.

But just three months later, the family found themselves in a fight for Harvey’s life after he was diagnosed with the rare condition Hemophagocytic Lymphohistiocytosis (HLH), an aggressive and life-threatening autoimmune disorder that can quickly shut down a young child’s immune system.

“When the doctors first started talking about HLH, we had never even heard of it before,” said Lynette Snyder, Harvey’s grandmother. “It sounded like some kind of medical terminology that didn’t even sound real.”

The Cincinnati Children’s Hospital, who Lynette said has been working with the Akron Children’s Hospital, says HLH is an immune deficiency disorder in which part of the immune system is missing or defective. With HLH, certain white blood cells, (T lymphocytes and macrophages), are not able to be switched off and build up in organs including the skin, spleen, and liver. These cells then destroy other blood cells such as red blood cells, platelets and neutrophils, along with causing damage to affected organs.

For infants under 1 year old, the condition can prove fatal if not properly treated. Immediately after his diagnosis, Lynette said Harvey began an intensive treatment regimen at Akron Children’s Hospital, including chemotherapy and a bone marrow transplant on Sept. 5.

Harvey Snyder was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH) shortly after being born in February and has been receiving treatment at the Akron Children’s Hospital. Young Harvey has had a bone marrow transplant and the family hopes he will be able to join them at the Ronald McDonald House in Akron in January. (Photo Provided)

“The treatment consists of chemotherapy, so they’re tearing down the old immune system, and then it has to be completely replaced by a bone marrow transplant,” Lynette said.

She said the first 100 days after the transplant are critical, as the new bone marrow works to engraft and replace Harvey’s failing immune system. Remarkably, she said Harvey reached 100% donor cells within just 30 days, an unusual and positive sign for his recovery.

However, she said the road has not been easy. Harvey has faced numerous complications, including difficulty retaining fluid that required intensive care and a hematoma that blocked his digestive system. For the past three months, she said he has been fed entirely through a port and feeding tube.

Through it all, Lynette said the family has been overwhelmed by the support they’ve received from the community. Harvey’s parents created a Facebook page called “Harvey’s HLH Journey” to keep loved ones updated, and the page has attracted followers from across the country.

“We feel very strongly that the prayers that people have offered up on his behalf have been very instrumental in his recovery,” Lynette said. “You can see it in [Mary’s] posts, the kind of the anguish that she’s been through as a mother.”

Harvey Snyder was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH) shortly after being born in February and has been receiving treatment at the Akron Children’s Hospital. Young Harvey has had a bone marrow transplant and the family is hopeful he will be able to join them at the Ronald McDonald House in Akron in January. (Photo Provided)

She said the family has also been grateful for the resources provided by the Ronald McDonald House in Akron, which has allowed them to stay near the hospital throughout Harvey’s treatment. Harvey’s father, Isaac, an electrical engineer, has been able to work remotely, with the support of his employer, ProFusion. She said despite the hardships, the family found a way to come together for the holidays.

She said since October, Holly, Harvey’s 4-year-old sister, had not been allowed to visit the hospital due to the cold and flu season protocol.

“Anyone under 12 is not allowed to be in the room. So, that’s been kind of hard, because they couldn’t really be with him at the same time, because one of them had to be with Holly.”

However, for Christmas, Lynette said the hospital made an exception to allow the entire family — Harvey, his parents Mary and Isaac, and his sister Holly — to be together in Harvey’s hospital room.

“This was an answer to prayers for them, because it allowed the four of them to be together. Harvey just loves his big sister and she’s the best big sister. She looks out for Harvey too,” Lynette said.

Harvey Snyder was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH) shortly after being born in February and has been receiving treatment at the Akron Children’s Hospital. Young Harvey has had a bone marrow transplant and the family is hopeful he will be able to join them at the Ronald McDonald House in Akron in January. (Photo Provided)

She said being able to celebrate the holidays as a complete family, even in the hospital setting, was a meaningful and heartwarming experience.

“It kind of forces you to stop and reevaluate what’s important and to remember what the season is about,” Lynette said. “Having the four of them together, just for a quiet Christmas together, was, you know, an answer to prayers for them, because it allowed the four of them to be together.”

She said the family recently learned that the name Harvey is derived from the Old Breton name “Haerviu,” which means “battle-worthy” or “worthy of a battle.”

“So that kind of takes on a new meaning,” Lynette said. “There’s been a lot of conversations at the hospital about his name, because it’s not really a common name, but he’s really grown into it.”

As Harvey continues his recovery, the family is focused on raising awareness about HLH and the critical need for bone marrow donors, especially for young patients like Harvey. The family hopes that by sharing Harvey’s story, they can inspire others to join the bone marrow registry and potentially save a life.

“It’s kind of a small window. They try to match the gender. And for someone as young as Harvey, they wanted the youngest bone marrow donor they could have,” Lynette said. “We would really like to raise awareness to become a donor, to get on the bone marrow registry. All it takes is a mouth swab, and they will mail it to you.”

More information about becoming a donor can be found at bethematch.org.

Douglass Huxley can be reached at dhuxley@newsandsentinel.com

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Online Resources

Click the following links for more information about HLH and Harvey’s journey:

* Harvey’s HLH Journey

* Cincinnati Children’s Hospital “Max the Angry Macrophage” video about HLH

* Be a bone marrow donor