Ben Wallace, Diagnosed with a Mystery Illness, Is Now a Recent Graduate

Ben Wallace jokes that his parents pioneered masking and hand sanitizer nearly 20 years before the COVID-19 pandemic.

When he was a toddler, his parents kept masks and industrial-strength hand sanitizer by the front door of their suburban Philadelphia home because they had an immunocompromised kid.

“We were nuts,” Natalie Wallace tells PEOPLE. “But we were scared to death.”

Natalie’s eldest son, Zachary George Wallace, was a healthy child when he was born in January 2001. But a month after he turned 2, Zach had a fever and was throwing up. His mother took him to the ER, but back home he had a seizure in her arms. Within 24 hours, he was paralyzed and blind.

Then, three days after his 4th birthday, he got sick again and died.

Natalie was three months pregnant with another little boy, Ben, at the time of her older son’s death. When Ben was five months old, he first showed symptoms of the same mystery disease that killed his brother.

In 2007, PEOPLE covered the family’s ordeal, detailing the weekly fresh frozen plasma transfusions as doctors attempted to treat a disease they couldn’t exactly diagnose. Now, all these years later, Ben, now 18, graduated from Montgomery County Technical College in June with a certificate in IT and is job hunting.

“I’m really big into technology and assistive technology – like braille and screen reading,” he tells PEOPLE. “I’m hoping to get a job helping people with that.”

Ben still receives blood transfusions every other week. “They’re actually really draining,” he says. “Because they give me a lot of medications, and the medications make me really tired and groggy after. So I always walk in with all this energy, and then I usually leave in a wheelchair because I’m usually either too dizzy or too tired to walk down the hallway.”

Regardless, the transfusions keep him alive. “For years he was at the hospital weeks at a time,” Natalie, 50, says, highlighting how he will now spend a night or two at the hospital if he gets sick.

The blood transfusions, according to Natalie, replace whatever protein is genetically missing from his immune system. “They knew it was in his immune system, they just didn’t know which one. They still don’t,” she says. “But at least we know that doing the blood transfusions — and steroids occasionally — is replacing whatever.”

About three years ago, Natalie reached out to the Undiagnosed Disease Network.

“I was like, ‘Dude, it’s been years. What other options do we have?’ ” she says. “They ran every test, and nothing came back. I kind of expected it. But I was hoping — because I’m getting older too — and it’s scary thinking: Is this what he’s going to have to do forever? Get a blood transfusion every other week? That’s a lot.”

For years, Ben was visually impaired, but he had enough vision in one eye that he could see a little bit. “Good enough for him to be able to see his iPhone close up, and shadows if a branch was hanging down,” Natalie says.

However, after a family vacation to Florida in April 2022, he got COVID and lost his remaining sight. “He lost all of it. The whole eye detached,” his mother says. “That was horrible. I’m still not over it. He is. He accepts it and he just moves on. But I’m just so frustrated because he only had that tiny little bit – and it was just enough for him – and then that happened. I’m so frustrated.”

Ben is brave and adventurous, and he’s been rock climbing since he was 8. “He says he can’t see the bottom, so it doesn’t matter,” Natalie says.

The teen is also “an elevator connoisseur,” according to his mom, “because all we could do in the hospital was ride on the elevator.” (Ben even has a YouTube channel devoted to elevators.)

This year marks the 20th anniversary of the Zachary Wallace Fund, in honor of Ben’s older brother. The family hosts two fundraising events every year — a golf tournament and a St. Patrick’s Day dinner — to raise money to help families with children with special needs.

“We’re still helping families,” Natalie says. “That’s definitely been a blessing in keeping Zach’s memory alive and not forgetting. Obviously, we won’t forget. But making other people aware that it doesn’t just end.”

The Fund built a handicapped-accessible playground, with Zachary’s name on a big arch.

“We just try to help families,” Natalie says. “As they come, as we see them, and we give donations. The letters that come back are so heartfelt and make it worthwhile of all the hard work that we do.”

Natalie explains that her son’s cheerful, optimistic look at life also helps. “He lifts me up. He’s my rock,” she says. “He’s so funny. He’s so down to earth and compassionate and just an all around looking out for other people. He has such a good heart. I know whatever he does, he’ll thrive.”

Still, she’s scared when he gets sick — but not as terrified as when he was a kid. “I still don’t know this disease enough to say: if he gets blood transfusions every other week, is that going to be enough?” Natalie says. “But he knows his body so well, and he knows when he doesn’t feel well.”

She continues, “He missed Disney this past year. I tried to just take him to one park just one day, and he got sick the night before, so he missed out on Disney. It was horrible and so sad, so that sucked. And he was like, ‘Mom, I’m 18. If I was 8, it’d be different.’ I said, ‘I know, but you’ve never gotten to experience it and I want you to experience it at least one time.’ ”

“And so that’s got to be on our bucket list to do that again. Both times we went to Florida he was in the hospital, so I’m like, “I’m scared,’ ” adds Natalie.

Currently, Ben wants to move out and live independently, but his mother worries.

“I always make fun of him and say, ‘Well, how if you’re doing your laundry, and you drop a sock?’ He’s like, ‘Oh, well, then I dropped a sock.’ He’s like, ‘Really? You’re worried about a sock?’ and I’m like, ‘I don’t know. It’s just a point. How about if you need me and I’m not there?’ ” she says. “Or he’s like, ‘Well, then I will figure it out, or I will find somebody.’ So that kind of stuff still makes me snotty.”

“I just want him to be happy — and he is. I just want him to have a job that he loves. I want him to have a job that has a purpose and he’s making a difference,” Natalie adds.