by Joe Tressa
When Chestnut Hill resident Becky McWilliams gave birth to her son Kieran moe than three years ago, she had no idea that he would soon be diagnosed with one of the rarest diseases in the world: the Prader-Willi Syndrome (PWS), which occurs approximately once in every 15,000 births.
The syndrome causes the child to feel a sense of hunger all the time. Ever since her son was diagnosed, McWilliams has dedicated much time to researching the syndrome and attempting to raise money for research. She has hosted her “One SMALL Step” walk for the past three years, and is hosting another walk this year on Saturday, Sept.7.
The 2K walk is organized to raise money for research on PWS and will take place at the Norristown Farm Park in Norristown from 10:30 a.m. until 1 p.m. Approximately 200 to 250 walkers are expected.
Artist/musician/comedian David C. Perry, better known as “Mr. David”, will also be at the walk performing his “Drawings, Songs and Silliness” comical concert. There will also be a lunch and a basket raffle.
The defining symptom of PWS is insatiable hunger, and those diagnosed with the syndrome never have a sense of feeling full, which causes them to eat more than the normal person. This is why many people with the disease become obese.
There are three phases of PWS: the first stage is where children are born with very low muscle tone and no ducking reflex. The second stage is an increased interest in food. The third stage is when an insatiable hunger kicks in, which usually occurs from age 2 to 10.
McWilliams claimed that Kieran is doing great dealing with the disease. He has recently started walking and running. But, the defining symptom of PWS is beginning to appear in Kieran.
“He has an increased interest in food,” McWilliams said. “It hasn’t gotten to the insatiable hunger phase yet, but he does seem a little more interested,”
McWilliams, along with her husband, Blair, also have two other young boys, Jackson and Julian. She said it was difficult to deny Kieran food, while satisfying Julian and Jackson’s needs at the same time.
“With three children, it can be very challenging to meet all of their needs,” she said. “It’s heartbreaking to have to restrict Kieran’s diet and not always let him eat what his brothers eat.”
The One SMALL Step walk that McWilliams coordinates has been a huge help in raising money for PWS research. Her event has attracted around 200 people the past two years, and she expects this year’s event to draw the same amount of walkers.
People attending the walk are urged to donate money, but are not required to. So far, McWilliams and her husband have raised close to $56,000. Their goal is to raise $60,000 to donate to the Foundation for Prader-Willi Research (FPWR). This foundation has been highly successful in raising money for research, having raised about $3 million since 2003 that has funded more than 60 research projects.
McWilliams’ walk is not the only one that is held in this country or the world. According to the FPWR’s website, 66 walks took place last year in the United States, Canada, United Kingdom, Belgium and France, raising more than $1 million.
For 2013, the foundation is striving to have walks take place in at least 100 locations around the world and to raise at least $1.3 million for research purposes. The FPWR also sponsors other fund-raising events, such as galas and golf tournaments. Becky and Blair, along with many other New York City area families, are housing the first annual”Live Life Full”gala in New York City in November. All proceed will benefit FPWR.
McWilliams, however, is determined to raise money at her walk this year.
“It’s critical that families raise money for research,” she said. “Some new research is coming out and it looks promising,”