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Family battling childs rare blood disease
Blood drive set for Friday to help him and others
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Jeremiah Nash, 4, shyly listens as family members talk about his life on Tuesday. Jeremiah has Bernard-Soulier syndrome, a rare genetic disease marked by uncontrollable bleeding. - photo by Erin O. Smith

Christmas morning is supposed to be about smiles, laughter and good cheer.

For one Gainesville family in 2011, it was complete horror and panic, as Beronica Nash awoke to find her 6-month-old son Jeremiah soaked in blood.

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

An immediate trip to the hospital would bring only temporary relief. Jeremiah started bleeding again on the way home, marking the first step in what has been an incredibly challenging journey for the Nashes.
After more hospital and doctor visits, Jeremiah eventually would be diagnosed with Bernard-Soulier syndrome, a rare genetic disease marked by uncontrollable bleeding.

Jeremiah, now 4, had been getting blood transfusions every week at Children’s Hospital of Atlanta at Egleston.

“Now it’s every other week unless something happens in between,” Beronica Nash said.

“A couple of weeks ago, we were at church and I could not go into the service because he started bleeding,” she said, adding that his nose typically is the source of the “bleeds.”

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

Her husband, Deitrich Nash, nodded in agreement.

“It catches you by surprise sometimes,” he said. “You never get used to it — I mean never.”

Beronica Nash 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 Nashes are working with Be The Match, a nonprofit organization that maintains a marrow donor registry in treating life-threatening blood diseases.

Jeremiah, who has a 13-year-old brother, Malachi, and 11-year-old sister, Makira, is waiting on a bone marrow transplant.

If that comes about, “I would need to be (at the hospital) for six months … just to make sure the (new) bone marrow is working correctly with his body,” Beronica Nash said.

An American Red Cross blood drive has been scheduled in Jeremiah’s honor, set for 10 a.m. to 3 p.m. Friday at the Family Life Center of First Baptist Church of Gainesville, 751 Green St.

“My goal is to have 25 donors because that can save 75 lives,” Beronica Nash said. “(The event) is really for other people out there (as well) who need blood, platelets and bone marrow, so it’s not just for Jeremiah.”

Also, Be The Match will be at the event “for anyone who wants to join the registry for bone marrow,” she said.

The family has other matters to consider, as well, including that Jeremiah is about to start pre-kindergarten — something the family will be watching carefully.

“If there’s an emergency at school, they can contact me and I can go and treat him there,” Beronica Nash said.

Looking further into the future, she said she doesn’t consider his survival odds or anything close to that.

“I strongly, strongly believe he’s definitely going to be an adult, and he’s told me he’s going to be a preacher,” Beronica Nash said. “So, that’s exactly what he’s going to do.

“I’ve told him, ‘You’re going to be a living testimony.’”

Jeremiah, who enjoys singing with mom and wearing one of his father’s ties as he gives a sermon, clammed up when he was asked a few questions about his life, including school starting.

His mother, trying to get him to talk, succeeded after bribing him with peppermints.

“Tell ’em about momma’s kisses — they do what?” she asked.

“They make me feel better,” he said.

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