LEWISBORO, N.Y. - Sitting with Pia and David Dorson in their living room, it’s hard to imagine any dire predictions being made about their seven-year-old daughter, Zahra. Through a sea of Magna-Tiles, Zahra played on the floor with her little sister, four-year-old Zoe, as her parents shared about their day-to-day lives. Wearing a sweatshirt covered in hearts, leather leggings, and a big smile, Zahra proudly showed off the backpack she takes to Meadow Pond Elementary School, complete with her colorful lunch box tucked inside.
But the fact that Zahra can be in a regular school environment and is able to eat lunch with her friends is no small matter. Zahra lives with a rare genetic condition known as Prader Willi Syndrome (PWS). It is a complex condition characterized by low muscle tone, developmental delays, and an insatiable hunger due to dysfunction in the hypothalamus.
Individuals with PWS never experience satiety, making it crucial to control access to food and maintain a strict diet. Even fruit is an occasional treat and must be restricted to a serving the size of her own palm. Zahra needs to stick to whole food staples, like cooked veggies and brown rice, to prevent digestive upset. And even with careful monitoring and a stable routine, Zahra’s discomfort causes her high levels of anxiety and emotional dysregulation.
The Dorson family have spent years advocating for families like theirs who are affected by Prader-Willi Syndrome. And now, Pia Dorson is organizing a local event that will fund even more family support, better policy, and research for treatments for PWS.
Zahra’s early days were challenging—she spent seven weeks in the neonatal intensive care unit. Her low muscle tone meant she barely moved or opened her eyes as an infant, and doctors struggled to determine the cause of her symptoms. Diagnosing PWS was a painful experience for her parents, Pia and her husband, Dave, who recalled receiving alarming predictions from medical professionals.
"Diagnosis Day comes, and it's the worst day of your life," David Dorson said. "Basically, they’re telling you that life is over, everything is going to be terrible. And as a parent, your world just crumbles around you."
However, they soon connected with the Prader-Willi Syndrome Association (PWSA), an organization that became a beacon of hope. "We found somebody from this organization online, and within 30 minutes, we were on the phone with them," David recalled.
"She told us, 'Don't listen to that. You're going to have a sweet, loving kid. Go see this doctor. This is what you need to do next.' It was just a ray of light in the darkness."
The family now plays an active role in PWSA, mentoring new parents and providing emotional support. Pia works for the nonprofit organization part-time, and David joins her as a parent mentor to other families. The association assists new parents with care packages, crisis support, and community building, offering guidance during the difficult moments of diagnosis and beyond.
"Now that I’m part of the organization, I’m in the thick of it, 100% of the time." Pia said. "One thing I didn’t realize at first is that you can’t really get away from the disease. It’s with you 24 hours a day—there are always texts coming through, families in crisis, people wanting to give up. It’s heavy."
In addition to supporting other families, the Dorsons have dedicated themselves to raising awareness about PWS. In late February, they traveled to Washington, D.C., to participate in Rare Disease Week, where they met with policymakers, including representatives from the offices of Sen. Chuck Schumer, Sen. Kirsten Gillibrand, and Rep. Mike Lawler to advocate for funding, medical research, and legislative support for rare diseases like PWS.
Despite the challenges of PWS, Zahra thrives in the structured, supportive environment her parents maintain for her. Her weekly schedule includes swimming, horseback therapy, speech therapy, and adaptive karate, all carefully planned to help her build strength and develop skills. While her cognitive processing is slower, she continuously achieves milestones that her parents cherish—whether it’s offering her first smile, transitioning to a new activity, or even playfully talking back to her dad.
"Every step she takes makes her stronger," David said. "Every little moment means so much more."
And while Zahra has made significant developmental progress and is relatively stable, new treatments could be the key to unlocking her full adult potential.
"If we put a new drug in the pipeline now, Zahra will be 23 before it’s approved, because it takes the FDA approximately 15 years to approve a drug" Pia said. "We need treatments earlier, so these kids have the best chance at a full and independent life."
Zahra’s Night of Light: An Evening of Hope and Support
As part of her work for the PWSA, Pia Dorson is now organizing the first annual “Zahra’s Night of Light” event, which will raise awareness and funds for PWS research and support programs. The event is scheduled for April 5, from 6 p.m. to 10 p.m. at Bedford Historical Hall, with a fundraising goal of $85,000.
The event will feature food, drinks, a silent auction, and guest speakers, with all proceeds benefiting PWSA. Funds raised will go toward vital research, family assistance programs, and government advocacy initiatives aimed at improving the quality of life for those with PWS.
“Every dollar raised brings us closer to a treatment, more support for families, and ultimately, a cure,” Pia said.
The family’s ultimate dream is to see advancements in medical research that could alleviate some of the most difficult aspects of PWS, particularly the unrelenting hunger that affects those with the condition.
“I’m thinking about a cure,” said Ronin, Zahra’s 11-year-old older brother. “So she’s not always hungry, and so she doesn’t wake up in the middle of the night.”
For now, the Dorsons are zeroed in on their mission, ensuring Zahra and others like her receive the support, care, and advocacy they need. Their work is not just about their daughter, they say—it’s about fostering a community of hope and resilience for those who are diagnosed with PWS as well as their parents and siblings.
Those interested in attending or supporting Zahra’s Night of Light can find more information at www.pwsausa.org/event/zahras-night-of-light/.
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