How a Dallas boy’s heartbreaking battle with a rare genetic disorder might have saved his neighbor’s life.
DALLAS — The pregnancy was uneventful. The birth was uncomplicated.
So the phone call they received, days into 7-pound, 12-ounce William Hall’s life, was completely unexpected.
Late on a Friday afternoon, a pediatrician told William’s mother, Taylor, that a blood test had come back showing a rare genetic disorder. The pediatrician said the Halls shouldn’t worry, as it was likely a false positive.
But Taylor turned to Google.
Then she wished she hadn’t.
“The first thing you’re seeing is childhood, fatal, death,” Taylor said. “That turned into a huge spiral immediately.”
The heel-prick blood test that every newborn in Texas undergoes revealed that William potentially had adrenoleukodystrophy (ALD). Within weeks, additional blood tests confirmed it.
ALD can cause irreversible brain damage.
For now, Taylor’s “Velcro baby who loves to cuddle and loves his big sister, Emma,” shows no symptoms.
The Halls hope to keep it that way.
What is ALD?
ALD primarily affects boys and is passed down through the X chromosome. It prevents the body from breaking down certain fatty acids, which leads to a toxic buildup in the brain.
And no one knows until it’s too late.
“They are born, and you’d never know there was anything going on,” said Tyler Hall, William’s dad.
Once the buildup reaches a certain point, it begins to impact brain function. Seemingly healthy patients suddenly experience trouble with their vision, hearing, walking, and understanding.
William’s diagnosis, while gut-wrenching to hear, could save his life.
It came early enough for possible intervention. And it never would have been discovered if not for a family living in the same Dallas neighborhood.
They used to live on the same street in Lake Highlands.
Julian’s life
Julian Kampfschulte appeared to be absolutely thriving.
He’d been an easy baby – a snuggler – and was turning into a loving and generous child.
He was the peacemaker of this family. The kind of kid who wanted everyone to be happy. He couldn’t decide on a favorite color because he loved all colors, his mother Jenna Kampfschulte remembers.
He had thick curly hair and was “just a genuinely sweet child.”
Julian was born in 2008, and Jenna remembers noticing changes in the fall of 2015.
During Halloween, he was always clinging to his mom or dad, Jenna said.
She couldn’t understand why.
“He didn’t know what was happening. He was just very anxious,” Jenna recalled. “We had a lot of moments – and I struggle still to this day – where he’d need a lot of help and I’d be frustrated because I didn’t understand why he needed me to walk him somewhere when he’d done it a hundred times on his own.”
They noticed he didn’t always respond when they called his name. Those were early signs his hearing was going, as was his cognitive ability.
“It would be intermittent,” Jenna said. “He could process things and then he couldn’t. There were just gaps when he wouldn’t be there.”
Then his teacher called them to say Julian just wasn’t acting right.
That November, doctors discovered he had ALD.
Unlike William, this diagnosis came too late.
His hearing, vision, and cognition continued declining. And there was no reversing the damage. The Kampfschultes spent the next 11 months loving on Julian and doing all they could to make memories with him.
They took trips and hosted parties, and kept him in school as long as they could. But slowly, Julian’s condition worsened. He lost all motor skills and cognitive ability.
“When I try to explain grief to somebody, it’s like you have a weighted vest on,” Julain’s dad, Kurt Kampfschulte, said.
“When you first put it on, the burden is immense. But, as time goes by, you get stronger. It’s always with you, and sometimes it magically goes from being heavy to ridiculously heavy because a song comes on the radio or it’s the first day of school. His birthday is a tough one.”
Their grief became a mission.
Besides other families who’d lost a child to the same rare condition, the Kampfschultes started lobbying. They wanted ALD added to the list of conditions screened during newborn blood tests.
Their lobbying efforts paid off.
William’s hope
In 2019, Texas began screening every baby for ALD.
That’s the only reason the Halls know what the Kampfschultes didn’t.
When they lost Julian, Jenna and Kurt lived on Parkford Drive in Lake Highlands – the same street Taylor and Tyler call home. In fact, the Halls live across the street from the Kampfschultes’ old house.
Taylor and Tyler never met Julian. But they think of him all the time.
“We owe everything to him,” Taylor said. “I want his name to live on, and I want us to do some good for him.”
“That’s a life that saved so many, and will continue to save so many,” Tyler said.
William turned one in March, and because of his early diagnosis, the Halls have hope their neighbors never did.
Frequent blood draws continue, and once he reaches 18 months, he will undergo an MRI twice a year until he turns 12. If doctors detect any changes, he could receive a bone marrow transplant. The procedure won’t cure ALD, but it could keep William from experiencing life-altering symptoms.
“We have a long battle ahead,” said Tyler. “But the days today are as normal as they can possibly be – which is a blessing.”
How to help
The Halls launched a major campaign to raise money to support ALD research, with a fundraising goal of $3 million.
They’re already two-thirds of the way there.
They hope anyone who is moved by William and Julian’s story might donate to their cause. If that isn’t possible, they ask that you consider registering to be a bone marrow donor.
William currently does not have a perfect match.
“We are very happy the Halls have a chance to do what we couldn’t,” Kurt said.
“We wish we didn’t have to do it at all. But we look forward to watching William grow up and seeing him do whatever things he’s going to do.”