By Sue Wambolt, Contributing Writer
Northborough – On Feb. 28, 2014 Nikol Maher gave birth to her son, Jack, at 35 weeks via emergency cesarean section. The joy that Nikol, her husband John and their daughter Madelyn felt quickly gave way to fear as Jack was whisked away to the NICU – too weak to move, cry, eat or even breathe on his own. After 3 weeks of testing, Jack was diagnosed with Prader-Willi syndrome.
Prader-Willi syndrome (PWS) is a complex genetic disorder affecting appetite, growth, metabolism, cognitive function and behavior, according to the Prader-Willi Syndrome Association website, www.pwsausa.org. It is typically characterized by low muscle tone, short stature (when not treated with growth hormone), incomplete sexual development, cognitive disabilities, behavioral problems, and the hallmark characteristics – chronic feelings of insatiable hunger and a slowed metabolism that can lead to excessive eating and life-threatening obesity. It is estimated that one in 12,000 to 15,000 people has PWS and is the most common genetic cause of obesity that has been identified to date, according to the association.
“While we are lucky that Jack hasn’t been affected by the hunger yet, this is our biggest fear and constant worry,” shared Nikol Maher. “Something that gives us hope and helps me to breathe easier is that there are a lot of studies going on for different medications that could help our children and relieve their hunger. The Foundation for Prader-Willi research (FPWR) continues to fund many of these projects and we are committed to doing everything we can as a family to help them.”
Last year, wanting nothing more than to help Jack and other children suffering from PWS, Jack’s aunts and uncles organized the Hoops to End Hunger for Jack fundraiser. Based around March Madness, the event consists of participants throughout New England completing March Madness brackets while donating funds for critical research in Prader-Willi Syndrome (PWS).
The fundraiser runs from February 28 (Jack’s second birthday) until the NCAA championship game Monday, April 4.
Prizes for the winners of the bracket challenge include a baseball signed by Boston Red Sox player Hanley Ramirez; a handmade necklace donated by Towne & Country Jewelers (Westborough), gift cards from Jenny Boston (Westborough) and Kennedy’s Market (Marlborough) and sunglasses donated by Vision Associates (Marlborough).
To participate in the fundraiser visit http://onesmallstep.fpwr.org/dw/users/jackhoops/Northborough2016 and fill out a March Madness bracket.
While John and Nikol pray for a cure for PWS, Jack continues to make progress. He has overall developmental delays and very low muscle tone, but works tirelessly to meet his milestones.
“Jack is the sweetest little boy. He adores his family and loves to make everyone laugh. He is very social, has a great sense of humor and nothing is better than hearing him giggle,” Maher said.
Jack’s family plans to continue the fundraiser annually to raise money for much needed research and to raise awareness for PWS.
For more information visit Facebook and put “We HOOPS to End Hunger for Jack! Prader-Willi Bracket Challenge!” in the search bar.