Violet Bystrak has had a big year.
The Orchard Park girl, now 3½ years old, has made significant strides since she was featured last June in a story in The Buffalo News about her condition, called Prader-Willi syndrome. Violet can now walk. That's something her parents were told she might never do.
And she talks endlessly these days – about, her mother jokes, pretty much everything.
“She's like the mayor of her school,” said Elizabeth Bystrak, Violet's mother. “She's amazing because she remembers everyone she's ever met.”
But Violet also faces ongoing challenges as she grows up with Prader-Willi – a rare disease that causes insatiable hunger and can lead to problems with obesity in both childhood and adult life.
Now, Violet's family members and friends – as well as others affected by or concerned about Prader-Willi – are planning an awareness and fundraising event for this Saturday at the Buffalo Zoo.
The goal of the event is to teach the public about Prader-Willi while raising money that will go toward research into the syndrome, organizers said.
The event also is designed to build ties among members of the local Prader-Willi community, said Bystrak, who is one of the organizers of the event.
“I want the PWS community to get to know each other,” said Bystrak, an instructor at Medaille College, who with her husband, Matt, has one other daughter.
“There's a lot of different things we can share, and learn from each other,” she said.
Bystrak said she hopes for at least 200 to 300 people at the zoo event.
Last year, local advocates raised about $40,000 with a walk that brought out some 400 people, Bystrak said.
Prader-Willi, a rare syndrome that experts believe affects about one out of every 12,000 children in the United States, is a genetic condition that children are born with.
The syndrome manifests itself in different ways, including learning difficulties, poor muscle tone, speech issues and behavioral issues.
One common symptom of the condition is an uncontrollable urge to eat. That can lead to problems with obesity for those who are dealing with the syndrome.
Bystrak said that her daughter, who was diagnosed soon after birth, struggles with food issues even at her young age.
The Prader-Willi Syndrome Awareness Day at the Buffalo Zoo will run from 11 a.m. to 2 p.m. Saturday, with registration beginning at 10. For a minimum $25 donation, participants will get zoo admission, a shirt, a bag, and more.
The event will feature a scavenger hunt on zoo grounds with Prader-Willi-related clues; an art show with works by local residents with Prader-Willi; animal meet-and-greets; and raffles. Healthy lunch options will be available.
The event will include two local families who have been public about their children's struggles with Prader-Willi, the Bystraks of Orchard Park, and Harry and Ann McLellan of Pendleton, who have a 7-year-old son, Matthew, with the condition.
In two previous awareness and fundraising events, the local families and supporters have raised more than $70,000 for Prader-Willi research, according to Bystrak.
Proceeds from the zoo event will go to the Foundation for Prader-Willi Research, a California organization, and the New York State Prader-Willi Alliance, Bystrak said.
More information and registration is available at http://onesmallstep.fpwr.org