For Father's Day, this dad just wants a cure for his daughter - CBS News 8 - San Diego, CA News Station - KFMB Channel 8

For Father's Day, this dad just wants a cure for his daughter

Posted: Updated:
Virgil Harris is fighting for a cure for his daughter, Jazmyne, and others who suffer Friedreich's ataxia. Virgil Harris is fighting for a cure for his daughter, Jazmyne, and others who suffer Friedreich's ataxia.
Dr. Mark Payne, a pediatric cardiologist with IU School of Medicine, has spent more than a decade researching a cure for Friedreich's ataxia, seen here speaking at the Jazz Kitchen in Indianapolis, Sunday, June 10, 2018. Payne says a drug treatment he dev Dr. Mark Payne, a pediatric cardiologist with IU School of Medicine, has spent more than a decade researching a cure for Friedreich's ataxia, seen here speaking at the Jazz Kitchen in Indianapolis, Sunday, June 10, 2018. Payne says a drug treatment he dev
Virgil Harris and his 23-year-old daughter Jazmyne Harris pose for a portrait in Indianapolis, Sunday, June 10, 2018. Jazmyne was diagnosed with Friedreich's ataxia (FA) at age 14. Ever since, Virgil has fought to raise funds for all people living with FA Virgil Harris and his 23-year-old daughter Jazmyne Harris pose for a portrait in Indianapolis, Sunday, June 10, 2018. Jazmyne was diagnosed with Friedreich's ataxia (FA) at age 14. Ever since, Virgil has fought to raise funds for all people living with FA
Virgil Harris listens to musicians during a fundraiser at the Jazz Kitchen in Indianapolis, Sunday, June 10, 2018. His daughter Jazmyne was diagnosed with Friedreich's ataxia (FA) at age 14. Ever since, Harris has fought to raise funds for all people livi Virgil Harris listens to musicians during a fundraiser at the Jazz Kitchen in Indianapolis, Sunday, June 10, 2018. His daughter Jazmyne was diagnosed with Friedreich's ataxia (FA) at age 14. Ever since, Harris has fought to raise funds for all people livi
Video

INDIANAPOLIS - Virgil Harris would do anything for his daughter, his baby. Doesn't matter that she's not a baby at all but a 23-year-old college student.

Of course he's proud of her. She's bright, funny and goal-oriented. But he's worried, too. Jazmyne "Jazz" Harris was an active, clumsy child - the kind of clumsiness that couldn't be blamed on pre-teen awkwardness. She played four sports - basketball, volleyball, kickball and softball - but she would sometimes fall during games for no apparent reason, then get right back up.

At age 14, Jazmyne Harris was diagnosed with Friedreich's ataxia (FA), a rare inherited disease that destroys nerves, impairs motor skills, and leads to heart complications and loss of speech. There is no approved treatment or cure.

It would be enough to terrify anyone, but she is lucky. She has a special dad and a special doctor in her corner. Both offer hope - one through a foundation in her name and the other through the search for a cure.

More: Father's Day detention: Immigrant's family pleads for release

More: Father's Day: Bobby Kennedy's eldest daughter remembers her daddy

Jazmyne Harris didn't let the frightening diagnosis define her during her high school years. She lived life, her father said. She was active in choir and theater in high school. She was the athletic trainer for the football team. She went to prom, got her first car. After graduation, she went on to Indiana State University to study criminal psychology.

Impact on body and spirit

But then the symptoms of the cruel disease that affects about 6,000 people in the U.S. really began to set in. By age 20, the FA accelerated its assault on his daughter, Virgil Harris said. "It took her ability to walk."

As that happened, he said, it began to take her spirit. "It depressed her out of this world."

She would lash out at her dad, the man who loves her more than anything, because she was angry that she was losing her independence. Does she still get angry? "All the time," she said.

How does she deal with it?

"I'm not the type to act out, so I guess I bottle up my emotions," she said. "I listen to music, but I don't really have an outlet for my anger. People wouldn't understand what I go through so I don't talk about it."

She fights through the depression and the anxiety and the anger because she sees how her father fights for her.

Facing God's challenge

Not long after that diagnosis in 2010, Virgil Harris, a divorced dad who operates a small commercial cleaning business, said he had a talk with God and struck a deal.

"I was so angry, I was crying while I was cutting the grass. I started talking to God. I said, 'Hey man, I'm a good dad, I fought for my children, I put them in private school and put them in church.'

June 15: Is coffee healthy or not: How to know if medical studies are worth your time

June 15: Recall on pre-cut melons linked to Salmonella outbreak expands to 23 states

"I didn't understand why he was doing this."

Virgil Harris said God answered him, but he wasn't wild about the response. What he heard: "I want you to fight for others like you fought for your children."

It seemed more than he could handle. But he would do anything for his daughter, so the self-made businessman with a high school education started the process to form a 501(c)(3) nonprofit. Several months later, Jumpin' for Jazz was born.

"My daughter is sick, so I made a deal with God that I got to help others and he'll let her be OK."

For nearly eight years now, Virgil Harris has upheld his end of the deal. He raises money for research into FA; his nonprofit helps arrange for ramps, wheelchairs and other services to make life easier for FA patients and their families; he and his daughter meet with patients who arrive in Indianapolis to seek answers from a doctor who has become their best hope for a cure.

Indianapolis doctor on forefront

Dr. Mark Payne is a pediatric cardiologist with the Indiana University School of Medicine. He has spent more than a decade researching a cure for FA.

A drug treatment he developed, with support from the National Institutes of Health, Wake Forest University and Indiana University School of Medicine, has shown promise in trials on mice and could be ready for human clinical trials next year, Payne said.

He sold the rights to TAT-Frataxin in 2016 to an East Coast biotech company to ensure its continued development and anticipated approval by the Food and Drug Administration, he said. But he continues his work as a physician-scientist, following the drug's progress and updating his FA patients on the clinical trials.

"If it works, it would be a true game-changer for those with Friedreich's ataxia and their families," Payne said. "With every year that goes by, these patients lose more muscle function and more heart function."

Payne has followed Jazmyne Harris ever since she was diagnosed.

"She is driven, she is very optimistic, she is highly motivated, she's also very bright," he said. "Like most of this Friedreich's population, they recognize their disease, but their response is, 'I'm not going to let this stop me.' Jazz is very much in that mold."

How her father copes

Jazmyne Harris gets around on a scooter or a rolling walker. She insists on doing as much as she can for herself in the home she shares with her dad. Occasionally, her walker gets stuck in a doorway or sometimes she falls when she tries to stand for short periods, but when her father comes running to help, she waves him off.

"She won't let me help," Virgil Harris said. "She gets frustrated."

And she sometimes takes that frustration out on him. But he can take it, he said.

"I'm built for it. I accept life, I accept God. Whatever's going on, I don't fault nobody. I was born to be who I am. I know she's angry, she wakes up angry, she goes to do something and it's a reminder of what's going on with her body.

"What I tell her is, that no matter what, you have to find a way to be happy today. You can't shut down today because you never know what God has in store for you tomorrow."

So, Jazmyne Harris goes to her twice-weekly physical therapy sessions, she continues her school work with her eye on graduating after one more semester, and she holds onto her dream of starting a career in criminal psychology.

"I've always been interested in the prison system and getting in the heads of people who do what they do," she said.

Virgil Harris wants more than anything for his daughter's dreams to come true, so he won't give up on her or others battling the same disease.

"My hope for everyone in this world with FA is that we can get a drug approved and treat this disease so they can get on with living their life."

To find out more about the disease and how you can help, visit www.crowdrise.com/jumpinforjazz.

Follow Maureen Gilmer on Twitter: @MaureenCGilmer

Powered by Frankly
All content © Copyright 2000 - 2018 KFMB-TV. All Rights Reserved.
For more information on this site, please read our Privacy Policy, and Terms of Service, and Ad Choices.