Meet Payton

“Never give up hope.”

Payton’s Journey with Angelman Syndrome:

Payton has always had a smile that lights up a room.

“She’s our first child,” her mother, Melissa, recalls. “My husband and I were just like, 'How did we get such a beautiful baby? Lord, she's gorgeous.'”

For the first few months of Payton’s life, everything seemed typical. But by four to six months, Payton began missing milestones. She had low core strength and a distinct wobbliness in her gate. What her parents initially thought was just a heavy head for her sweet little body turned out to be drop seizures.

By seven months, Melissa knew something was wrong, but getting answers wasn't easy. Doctors initially dismissed their concerns, telling them that all children develop differently.

“We just kept pushing and pushing because we knew,” Melissa says.

After months of several different tests, a final appointment with a geneticist changed everything. Within five minutes of walking into the room, the doctor recognized the distinct physical traits common in Angelman syndrome, the light complexion, blonde hair, blue eyes, and a big, beautiful smile. At 11 months old, Payton was officially diagnosed.

Living for the Dream

The diagnosis was hard to hear at first, but Melissa and her husband refused to accept a future without options. At the time, conventional medical advice focused solely on how to live with the disability. Melissa wanted more for her daughter.

When Payton was just 15 months old, Melissa co-founded the patient advocacy group FAST (Foundation for Angelman Syndrome Therapeutics) in hopes to spread awareness and find a cure.

“Because before this, people only taught you how to live with it,” Melissa explains. “Our foundation taught you how to live for the dream and raise money for science.”

For 19 years, Payton’s life has been a masterclass in resilience and hope. She undergoes weekly physical, occupational, and speech therapy sessions. She attends public school, thriving in an environment where she is integrated with typical peers. 

But while therapies offered steady progress, Melissa kept her eyes fixed firmly on the horizon of clinical research.

Finding RDR: An Experienced Partner in Research

After a two-and-a-half-year wait on a registry, the family got the call they had been hoping for: Payton was accepted into a clinical trial at Rare Disease Research. 

Participating in a clinical trial is a massive commitment. For them, it requires a two-to-three-day drive to the clinic every three months, as Payton cannot travel immediately after her treatments. It requires taking time off work and navigating complex logistics. But from day one, RDR has proven to be a different kind of research center.

Laura Sutton, a Clinical Research Coordinator has been with Payton and her family from the very beginning. 

“Building trust with the patient starts before they even step into the clinic” Sutton explains. “The amount of care I pour into even just writing an email is crucial to building relationships and it’s just what people deserve.” 

Through Sutton’s time at RDR, she has built long-lasting connections, and especially with Payton and Melissa.

“The experience has been amazing. Really good,” Melissa says. “I’ve only experienced positive things coming here. They are very accommodating to her needs. They're great people who fell in love with her too.”

RDR’s passionate and experienced care became vital when Payton faced unexpected challenges during the trial. Instead of letting bumps in the road derail Payton's progress, the team at RDR worked collaboratively with the family to create a proactive recovery protocol.

“Now we have a good grip on it,” Melissa says. “All in all, it’s been a fantastic experience.”

“We came here because of the trial, but we stayed because of the care. RDR makes a cumbersome process truly accessible.”

Real Progress, Real Quality of Life

While the trial hasn’t been an “overnight” journey, the cognitive and physical advancements Payton has made over the last three years have been life-changing.

“Her teachers started saying, ‘Oh my god, what’s going on? Payton is more aware, more engaged, tracking things with her eyes, and laughing at the right time,’” Melissa shares.

Today, Payton's gait and sleep have noticeably improved. She is vocalizing new sounds, trying hard to communicate, and showing an eagerness to learn new daily skills, like drinking from a normal cup and using silverware.

“Was it (improvement) as much as I wanted? No,” Melissa candidly admits. “Is it something that improves her quality of life? Yes, and it’s so exciting!”

A Message to Other Families

Melissa offers powerful words of encouragement rooted in hope and her daughter’s journey thus far.

“I always say to parents, to never give up on hope,” Melissa says. “Trials give hope. Do not be afraid to try, because science is amazing. They (our RDR researchers) are doing things to benefit the quality of these children's lives.”