A Rare Diagnosis, A Promising Breakthrough: Family Shares Impact of Texas A&M-Led Angelman Syndrome Research

Story by Courtney Price, VMBS Marketing & Communications

February 23, 2026

An Aggie-led breakthrough is pushing the boundaries of what’s possible for Angelman syndrome, offering new hope for children like Brantley Edwards and other families affected by the rare disorder.

When Jake Edwards first learned that his son, Brantley, was diagnosed with a rare disorder called Angelman syndrome (AS), there was virtually no information available to help him understand his son’s condition, let alone a treatment.

But now, thanks to the work of Texas A&M University researcher Dr. Scott Dindot and biopharmaceutical company Ultragenyx, a possible treatment for AS is on the horizon that could change his son’s life.

“When most babies are born, they come out crying,” Jake said. “But when Brantley was born, there was silence. He eventually made one sound and that was it. It was very scary and we had no idea what was going on.”

During the first year of his son’s life, Jake began to notice other signs that something was different.

“We noticed he was missing certain developmental milestones,” he said. “We would take him to the doctor for checkups and he’d just lie still on the table. As a firefighter paramedic, I also noticed some seizure-like activity.”

Brantley is now 12 years old and his diagnosis can present challenges, but by working hard to learn more about caring for people with AS — whom the Edwardses call “Angels” — his family gives him daily opportunities for success.

“For his day-to-day care, he has to have assistance with anything that requires fine motor skills,” said Michelle Edwards, Brantley’s stepmom whose 20 years of experience in nursing has helped her support him. “He needs assistance with some aspects of using the bathroom and with feeding himself. For example, he can pick up food with his hands and can use a fork if we load the food onto it for him. We’re working on spoons right now, because he tends to flip his wrist over.

“Many Angels have issues with walking and end up needing to use wheelchairs,” she said. “Brantley actually walks very well and can even navigate the stairs in our house with some help.”

“The big thing for us is that we don’t underestimate his capabilities,” Jake said. “Even if he struggles with something, we’ll keep working on it. I think a lot of families see the limitations when they first get a diagnosis, but we’ve never limited Brantley to what a textbook says about AS.”

Breaking Barriers

The rarity of AS means that Jake, Michelle, and Brantley’s mother, Samantha Edwards, have had to learn most of what they know about the disorder on their own while raising Brantley.

“It took a long time, but we finally got in to see a neurogeneticist,” Jake said. “She looked at him and said, ‘I’m 80 to 95% sure he has Angelman syndrome.’ We didn’t even know what that was. We’d never heard of it before.”

Once the diagnosis was confirmed with genetic testing, the Edwardses were told that Brantley would never develop speech and would have trouble with movement and motor skills as he grew up. Instead of focusing on Brantley’s limitations, however, they sought to give him every opportunity to express himself and experience things that a boy his age would enjoy, like beach vacations with the family.

They’ve even developed a way to help Brantley communicate his needs using colorful buttons on the dining room wall that have pictures above them.

“I was inspired by a TikTok video about dog training with voice-recording buttons and realized they could help Brantley,” said Michelle. “He uses them quite regularly and appropriately.”

For Brantley and his family, one of the keys to success has been early interventions with therapy.

“Even before he got his AS diagnosis, we were doing speech and physical therapy,” Jake said. “For example, he was having problems with eating and being able to chew his food, so we started feeding therapy. One of the things I tell any parent who has special needs children — whether it’s AS, autism, Down syndrome, or anything like that — is to start those therapies as early as you can.”

Research That Gives Hope

While the support of his family and care team has given Brantley the ability to communicate in his own way, the Edwardses are hopeful that research will continue to find breakthroughs that may help children with AS be able to express themselves more fully.

“For Brantley to have even a minimal amount of speech would be amazing,” Jake said. “We’d love for him to be able to tell us if something is hurting or even what he wants for his birthday or Christmas. I don’t think there’s a single word that could describe what that would mean.”

“We’d love to see more of his personality,” Michelle said. “Or to hear him say ‘I love you’ in his own voice or even ‘Stop putting me in these shorts! I hate this style!’”

A treatment for AS could also mean improving Brantley’s safety, since individuals with AS lack the ability to sense danger.

“We have to keep a chain bolt on the front door that he can’t unlock so he can’t leave without us knowing,” Michelle said. “We’d love for him and other children with AS to be able to understand the danger of things like swimming pools and strangers.”

“It’s just incredible that there are people who have dedicated their lives to something as rare as AS,” Jake said. “When Brantley was first diagnosed, there was nothing out there to treat it. We had to navigate everything virtually on our own. But now, we are starting to see options for treatment, and we’re so proud that Aggies are involved.”

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Note: This story originally appeared in the Summer 2025 issue of VMBS Today.

For more information about the Texas A&M College of Veterinary Medicine & Biomedical Sciences, please visit our website at vetmed.tamu.edu or join us on Facebook, Instagram, and Twitter.

Contact Information: Jennifer Gauntt, Director of VMBS Communications, Texas A&M College of Veterinary Medicine & Biomedical Sciences, jgauntt@cvm.tamu.edu, 979-862-4216

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