In 2015, Rolf Hill and Katie Burrows noticed less coordination and a clumsy walking gait in their oldest daughter, Sam. Doctors diagnosed her later that year with a disease they had never heard of – Friedreich’s Ataxia. Sam was 12.

The following year, the youngest Hill daughter, Becca, was also diagnosed with FA.

“Rolf called me and told me that [Becca] had tested positive,” Burrows said. “If I could have thrown my chair through the window, I would have.”

Becca was 9.

Friedreich’s Ataxia, often called FA, is a degenerative neuro-muscular disease that affects one in 50,000 people worldwide. Symptoms include a loss of coordination in the arms and legs, muscle loss, slurred speech and diabetes.

People with the disease have an average lifespan of between 30 and 50 years.

“The biggest thing for me is watching my sisters as they age, even looking at it from age eight to age 10,” said Polly Hill, the middle child and only sister unaffected by FA. “I’m getting better and learning to use one hand while Sam is no longer able to ride a bike.”

The following year, the youngest Hill daughter, Becca, was also diagnosed with FA.

“Rolf called me and told me that [Becca ] had tested positive,” Burrows said. “If I could have thrown my chair through the window, I would have.”

Becca was 9.

“I am really happy with my life, and I think I need to make sure that [Becca] can tell that,” Sam said. “I try to set some sort of positive example, not necessarily as a role model, but more so in the way of showing that being in a wheelchair doesn’t make much material difference to my life. …FA is a big part of my life but doesn’t define my life.”

The sisters also say they haven’t let FA interrupt their relationship.

“We definitely have our fun making fun of Sam, but it’s all love,” Becca said. “I love Sam so much and I haven’t told her this, but I hope she knows she made me realize that [being independent with FA] is possible.”

Contributing to a cure

Shortly after Sam’s diagnosis, the family created the nonprofit, Burrows Hill Foundation to Fight Friedreich’s Ataxia.

In 2017, the family hosted A Night to Fight FA , a fundraising event. Rolf said he hoped to raise $20,000 to $30,000. The event, held inside Navy-Marine Corps Memorial Stadium’s Akerson Tower, raised $100,000.

“None of us had any expectation that we would’ve raised that amount of money,” Burrows said.

On April 12, the seventh annual A Night to Fight FA will again be held inside Akerson Tower.

The family has raised and donated $1.1 million to the Friedreich’s Ataxia Research Alliance and about $100,000 for wheelchairs and workout equipment for others with the disease.

In 2023, the U.S. Food and Drug Administration approved a treatment for Friedreich’s Ataxia, although it is not a cure. The agency based its decision, in part, on studies done by the Ataxia research alliance.

A second Friedreich’s Ataxia drug has been submitted to the FDA for approval and a final decision is expected by Aug. 29.

Finding independence

Despite the disease, the Hill sisters are as independent as possible.

Sam, who has been using a wheelchair since her freshman year at the University of Southern California, will graduate in May with a degree in English.

“I never necessarily learned to rely on anyone with my wheelchair because I was 3,000 miles away from home,” Sam said. “I didn’t have the opportunity to ask for help with everything, which I think ended up benefitting me because I had to learn how to do things by myself.”

Polly, a second-year student at San Diego State University, often makes the two-hour drive to Los Angeles to help Sam with grocery shopping or cleaning her apartment. Polly said she has come to live with the guilt of being the only sister unaffected by FA.

Her sisters have also cited her efforts with the foundation, her participation in clinical studies advancing FA research and her general support as motivators in their experience with the disease.

“I think it’s pretty easy to see the position I’m in as pretty lucky,” Polly said. “In some ways not having FA is a pretty great place to be if you take it at face value. But it also comes with a bit of guilt in a sense that I’m going to be doing a lot of things in five years that are just going to be unfathomable to my sisters.”

Polly will graduate next year with a degree in journalism.

Becca will graduate from Severn School in Severna Park in May. She will join Polly at San Diego State next fall to study finance.

“I am in awe of them, each in their own respect,” Rolf said. “I am in awe of how they handle their diagnosis and their sisters’ diagnoses. It’s hard to put into words, they are each very different people but the one commonality between them is they’re just remarkable.”