KERNERSVILLE, N.C. (WGHP) – A woman in the Piedmont is one of fewer than 5,000 Americans with a rare condition called Wolfram Syndrome.
It can cause loss of vision and muscle control, issues with the balance of fluids in your body, urinary tract problems and more.
The Kernersville woman is leaving next week to start a clinical trial at the Washington University School of Medicine in St. Louis, Missouri.
“I want to help myself, but I also know how terrible this disease is,” said Holly Hellard. “This diagnosis typically comes to children and me being a teacher like that pulls at my heart.”
For the 34-year-old, being enrolled in a clinical trial aimed at finding a cure for Wolfram Syndrome is bigger than herself.
“Knowing that I could potentially help even the children that get this diagnosis like that, that’s really huge to me,” she said.
Her journey to a diagnosis started more than a decade ago when she was a college student. After years of severe pain, dizziness, battles with skin and cervical cancer and no explanation why, Holly and her husband were at a loss.
“I kept hearing those 3 words, I don’t know,” said Holly. “We were so frustrated and it was depressing because no one knew any answers.”
It was tough for Justin Hellard to see his wife go through it.
“Outwardly, she looks pretty good,” he said. “But on the inside, it’s hard knowing that her body is breaking down.”
Holly started getting somewhere in 2021, after visiting the Mayo Clinic in Jacksonville, Florida.
“The counselor there, he asked me, he was like, have you ever heard of Wolfram Syndrome? And I was like, no, I have not,” said Holly. “He was like, well, I’m 95% sure that you have it.”
Holly took herself to the experts at the Cleveland Clinic in Ohio where doctors finally gave her the answer she was looking for in 2022.
“I became at peace about it because I finally said okay, we’ll at least have an answer,” she said. “While there’s no treatment, while there’s no cure, we can finally try to move forward.”
Doctors in Ohio recommended Holly visit a doctor in St. Louis in charge of a Wolfram Syndrome clinical trial. Holly was the last of 12 people to get enrolled after someone had to drop out.
“That was a God thing,” she said. “God orchestrated all of that for me to take that spot.”
Holly’s hope is this trial will help restore some of her vision, so she can see the things her son and daughter accomplish.
“I’ve cried and cried and cried with my husband at night,” said Holly. “I think the biggest thing for me has been like, I’m not going to be able to see my children grow up.”
It puts things into perspective for the mom, and she hopes others will learn from her story.
“I may look fine on the outside,” she said. “Others may look fine on the outside, but for all of us to just be aware and be open minded to that people may be going through stuff that we don’t know.”
Holly said doctors have told her the other patients have had success so far in the clinical trial. She leaves for Missouri on Monday and will be there for four days every three months for the next year.
The trial involves taking medication and monitoring how long it stays in the bloodstream. The goal is to keep a patient’s blood sugar regulated while also seeing if the medicine can stop cell death.
336-654-5001
Service Areas
