Lake Highlands family raises funds to find cure for son's disease

A North Texas family is on a mission to save lives.

Tyler and Taylor's 10-month-old son William has a genetic disorder with no cure, and while it's rare, every newborn is screened for it.

Newborn screening found William has adrenoleukodystrophy, or ALD, a genetic disease that can affect the spinal cord, the adrenal system and the brain.

Once it affects the brain, a child with ALD may only live another 5 to 10 years.

"In a lot of medical diagnoses, there is nothing you can do about it and it's too late. I think, in his case right now, there's nothing we can do about it, but it's not too late," said Tyler Hall.

The Halls recently launched the WillToCureALD Fund with the goal to raise $3 million to advance current research.

While early detection saved precious time, the Halls were struck by the shocking lack of resources available for families and researchers battling ALD, which can be debilitating and ultimately fatal.

Right now, there are fewer than a dozen ALD specialists in the United States.

The Halls travel to Massachusetts General Hospital for appointments with Dr. Florian Eichler, Professor of Neurology at Harvard Medical School and Associate Neurologist at Massachusetts General Hospital.

Dr. Eichler says bone marrow transplants and other treatments can work to prolong life.

The key though, he says, is a gene therapy that could essentially fix the gene mutation.

"We're hoping that for William, some of these newer techniques will become available," said Dr. Eichler.

That’s also the ultimate hope for the Halls.

Given the rise in newborn screening for ALD since 2019, and the untapped potential of existing genetic research, the Halls believe this fund will spark life-changing advancements for families like theirs since a cure is absolutely possible, but only with adequate funding for research.

"Our hope is just increasing the speed at which these labs can work, run more trials, get more results to the biotech companies, and then they have the opportunity to develop the drug, the solution that cures ALD for William and everyone else," said Tyler Hall.

"We just want him to have a really beautiful life that he deserves," said Taylor.

About one in 17,000 newborns worldwide are diagnosed with ALD through newborn screening.