After twin daughters diagnosed with rare disease, Chapel Hill family starts foundation

CHAPEL HILL, N.C. (WTVD) -- A father and mother in Chapel Hill are sharing their painful family story to raise awareness about a rare disease.

It's a journey that began with unimaginable grief but led to something unprecedented -- a first of its kind drug trial at UNC.

Back in 2017, the lives of the Kahn family - David, Karen, and their twin daughters Amelia and Makenzie - changed forever in a doctor's office just before the girls' 7th birthday.

The twins were diagnosed with a rare, genetic, deadly disorder: Juvenile Batten disease.

"I vividly remember walking out of that appointment," David said. "Like slow motion just crossing the road. I just don't care if cars hit me or anything."

"I didn't understand how I would ever smile or laugh again," Karen said.

The couple came home and sobbed over their girls.

The disorder typically manifests between the ages of five and 10. Symptoms include vision loss, then seizures, dementia, loss of mobility and shortened lifespan. According to the National Institute of Neurological Disorders and Stroke, most children with this disease become blind and are unable to talk or leave their bed.

"They basically shut down from the inside," David said.

Currently, there is no cure for Batten disease.

The couple knew the path ahead for their girls. And there wasn't anything they could do about it.

That's when they launched a nonprofit to support the Batten community and raise money for critical research: ForeBatten Foundation.

'Fore' is a nod to David's profession as a golf architect, but also the nonprofit raises money through an annual online golf auction.

"It's a beast of an auction. It's crazy, some are calling it the best auction in golf," David said.

After moving to Chapel Hill 2022, the Kahns formed a team of researchers who developed a drug tailored specifically for the twins. They got FDA approved and started a $4.5 million, first-of-its-kind clinical study at UNC hospitals all in one year.

The study, led by UNC pediatric neurologist, Dr. Yael Shiloh-Malawsky.

During the study, Amelia, who was also diagnosed with autism at the age of two, started drinking by mouth and eating ice cream. She hadn't taken any food by mouth in about a year.

"We were so surprised and so pleased to see all these changes," Dr. Shiloh said.

It's not a cure, but it holds promise. With life expectancy for Batten patients between 15 and 25, Amelia and Makenzie, now 15, the Kahn's focus is quality of life.

"We can get (Amelia) giggling again, eating again, it's exciting. We can be together more as a family now," Karen said.

The ForeBatten Foundation has raised north of $8 million since its inception.

If you'd like to learn more about their online auction and live events click here.