Paying It Forward

While the COVID-19 pandemic has been a time of terrible loss, it has also been a period of tremendous generosity. According to Giving USA, charities received nearly $500 billion in donations during COVID’s first year. For Alicia, an individual contributor to The Assistance Fund (TAF), donating was personal.

“TAF was the one that helped with Norman’s condition,” she said. “I don’t think we know the scope of all TAF’s done for our family.”

In 2021, Alicia and Norman’s family wanted to pay it forward. Regular tithers, they donated to The Assistance Fund to help other families in need.

“TAF has helped our kid a lot,” she said. “We started giving to TAF each month.”

Growing up just outside Nashville, Tennessee, Norman was a typical, healthy kid. That all changed in 2020 when Norman was 20 years old, and his blood pressure dropped so low that he had to go to the hospital. Doctors ran tests and made a difficult discovery.

“The treatment costs a lot of money. His injections are $400,000 a year, and that doesn’t count his platelet medicine,” Norman’s mother, Alicia, said.

“Norman’s body just stopped producing bone marrow,” his mom, Alicia, said. “We didn’t know what happened.”

The doctors suspected it was cancer and started Norman on treatment to create new bone marrow. When that didn’t work, he was officially diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), a rare blood disease. Norman was placed on a waitlist for a bone marrow transplant.

Throughout the journey, Alicia has remained positive.

“He’s not suffering, he’s just anemic,” she said. “Once he gets the bone marrow transplant and does his program, we hope he’ll have a full recovery.”

To help with the cost of treatment, Alicia and Norman’s local pharmacy referred them to TAF’s Paroxysmal Nocturnal Hemoglobinuria Financial Assistance Program. The program provides financial assistance for out-of-pocket costs for all prescribed FDA-approved treatment for the disease.

“The treatment costs a lot of money,” Alicia said. “His injections are $400,000 a year, and that doesn’t count his platelet medicine.”

Each month, Alicia ensures Norman’s bills are paid and helps him submit documentation to continue receiving TAF assistance.

“Our kid is happy — he’s peaceful. Our family really, really appreciates TAF,” Alicia said.

“I don’t even know if he knows the enormity of his bills,” she said. “I don’t want him to worry about that.”

Since beginning his treatment, Alicia said Norman has been able to maintain his job and routines. And he’s still able to live on his own with his girlfriend, Grace.

“Grace and Norman have been able to stay independent because of the help that TAF has given them,” Alicia said. “We’re really blessed.”

Alicia said she also credits God, along with their family’s quality health insurance for helping them during a difficult year.

“I can’t imagine if we didn’t have insurance,” Alicia said. “I sit and think about it, and it gives me a panic attack.”

Because Norman’s immune system leaves him vulnerable to diseases like COVID-19, Norman must take extra precautions to stay healthy.

“It’s been pretty rough,” she said. “Norman’s job has been so good to him, though. They’ve let him come and go as he needs to.”

Thankfully, Norman’s favorite activities involve being outside. He and Grace are nature lovers and avid campers.

“That’s their favorite thing to do,” Alicia said. “They love to cook on the fire.”

“Norman’s just doing what he does. He’s living his life,” Alicia said.

Thanks to the effectiveness of his treatment, Alicia said Norman has stayed positive about his condition.

“Our kid is happy — he’s peaceful,” she said. “Our family really, really appreciates TAF.”

When he’s not camping, Norman enjoys drumming in a local heavy metal band.

“Norman’s just doing what he does,” Alicia said. “He’s living his life.”