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A young, tireless fighter: 5-year-old East Hall boy battles rare blood disease
Jeremiah Nash may need marrow transplant to overcome Bernard-Soulier syndrome
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Jeremiah Nash, 5, listens as his mom Beronica talks about Jeremiah’s Bernard-Soulier syndrome, a rare genetic disease marked by uncontrollable bleeding, Wednesday at their Gainesville home. Beronica had to quit her job at the Hall County Clerk of Courts to be Jeremiah’s full-time caregiver. - photo by Erin O. Smith

For young Jeremiah Nash, the waiting continues.

To keep him alive, the 5-year-old East Hall County boy’s mother, Beronica Nash, takes him every other Thursday to Children’s Hospital of Atlanta at Egleston for blood transfusions.

But a bone marrow transplant may be the ultimate treatment for Jeremiah’s Bernard-Soulier syndrome, a rare genetic disease marked by uncontrollable bleeding.

“We’ve been on the waiting list for years now,” Beronica said at her home last week.

For a transplant to happen, Jeremiah needs a donor whose marrow very closely matches his.

“It’s kind of a risk,” Beronica said. “And who’s to say that bone marrow would even work?”

Jeremiah has battled the disease since he was 6 months old.

On Christmas morning 2011, Beronica awoke to find Jeremiah soaked in blood.

“I thought he was dead,” she said in a July 2015 interview. “What it looked like was someone came into my house, stabbed him to death and left.”

After several hospital and doctor visits, the family finally got their diagnosis. Initially, Jeremiah had to get blood transfusions every week at Egleston. The visits lessened over time, unless “something happens in between.”

On one occasion, Jeremiah just randomly began bleeding from his nose before a church service.

“You never know when it’s going to start,” Beronica said.

And the family recently had a huge scare when Jeremiah complained of head and knee pain.

“He was in tears,” she said.

After a three-day hospital stay, “everything came back fine,” she said.

But his mother was worried, especially after reading that hemophiliacs could bleed internally in their joints.

Otherwise, Jeremiah, who is in kindergarten at White Sulphur Elementary School, is doing OK.

“He misses a lot of school,” Beronica said.

One bump is in his treatment is that he had become allergic to the platelets he had been receiving.

“The fear has always been that his body would start to reject the platelets, and that has happened,” Beronica said. “He’s allergic to the very thing he needs to stay alive.”

Medical staff now put his platelets through a “washing process” before the transfusion and he takes anti-allergy medications, such as Benadryl, before treatments.

Beronica had to quit her job at the Hall County Clerk of Courts to be Jeremiah’s full-time caregiver. As part of his care, she was trained to give Jeremiah medications through a port imbedded in his chest.

The ordeal has been also tough on other family members.

“It’s upsetting, seeing him at the hospital and how he cries when the needle goes into his port, and having all these tubes hanging from him,” said 13-year-old sister Makira Nash, a seventh-grader at East Hall Middle School.

Times are tough, but “there are people worse off,” Beronica said.

During her son’s three-day hospital visit, she went into a family lounge area and met a woman who “just started crying in my arms.”

The woman began to share that “she had been at the hospital for a month ... and the doctors had just told her that her child would have to be there for six more months.

“So, things can always be worse.”

Beronica said she has considered becoming an advocate for platelet donations, but she is too busy these days taking care of Jeremiah.

“Maybe someday,” she said.

However, “I definitely believe in paying it forward,” Beronica said.

She has started a project to give away clothing to needy children, and she puts together bags of needed items for the homeless.

The bags contain “blankets, hand warmers, thermal socks, pretty much anything you would need out there on the streets,” Beronica said.

Jeremiah “wanted to help, so he donated his toothbrush and toothpaste from the dentist office,” she said.

“What would help me the most is if someone had a facility, a home or a small building that they’re not using that they would like to donate space for my children’s closet,” Beronica said. “That would be a dream come true.”

Jeremiah, meanwhile, is looking to his own future. Early on, he wanted to be a preacher, wearing his father’s ties as he spoke as if he was at a pulpit.

But that has changed. He said he now wants to be a hematologist, or someone who treats blood diseases.

Asked why he changed his mind, Jeremiah said, “I was learning.”

Beronica smiled, saying, “Yeah, you’ve been learning about it. We’ve been talking about it.”