By Allison Gogarty
A local mother is taking action to raise awareness and funds for the syndrome that affects her daughter, and Greater Morristown businesses have enthusiastically joined in.
Alisha Devlin, a longtime Morristown resident, has organized a wine tasting and silent auction to benefit research into Beckwith-Wiedeman Syndrome, a rare overgrowth condition.
The event will be held at Cambridge Wines on April 10, 2015, from 6 pm to 8:30 pm. It is open to all, and Morristown Mayor Tim Dougherty has been invited.
Children with Beckwith-Wiedeman Syndrome (BWS) have a 600-times-greater risk for two types of fast-acting childhood cancers that affect the liver and kidneys.
They also often have symptoms such as an enlarged tongue and hemi-hypertrophy, where body parts are larger and/or longer on one side than the other. For example, one leg is wider and longer than the other.
Children with BWS need to be closely monitored for signs of cancer. Devlin’s daughter, Ary, gets bloodwork done every six weeks and an ultrasound every three months. Since this is such a rare condition and because the external symptoms can be mild, BWS often goes undiagnosed and these children do not receive the monitoring they need.
Though rare among the general population, BWS is more common among children conceived through in-vitro fertilization, which is how Alisha Devlin’s daughter was conceived. According to some research, 1 in 4,000 IVF children is diagnosed with BWS, compared to 1 in 15,000 among the general population.
“I want help spread the word about BWS to everyone, but especially those who have used or are planning to use IVF to conceive,” said Devlin.
“I wasn’t aware of this greater risk when I went through the IVF process and I wish someone had made that information available, so now I am doing everything in my power to prevent other parents from experiencing the questions and fears that I went through.”
Alisha Devlin took Ary to four different pediatricians before she was diagnosed. She now sees geneticist Dr. Jennifer Kalish, who specializes in BWS treatment and research at Children’s Hospital of Philadelphia (CHOP), where children from all over the country are treated for rare conditions.
Devlin and her husband, Joe, have made it their mission not only to raise awareness of BWS, but to raise money to help Dr. Kalish’s research and establishment of a BWS registry that will follow these children through adolescence into adulthood to track the longterm effects of the condition.
To that end, Alisha and Ary have reached out to all their favorite Morristown places to donate items for their silent auction. Cambridge Wines already has donated their space and a wine tasting and auction items will be provided by:
- Enjou Chocolate
- Woolverton Inn in Stockton
- Acupressure of Morristown (three treatments)
- Gymboree of Chatham (3 months of classes)
- Sushi Lounge
- Music Together of Warren ($100 gift card)
- Commit To Change (10 classes)
- Power Flow Yoga
- Barre 3
- Athleta (Morristown)
- Smartworld Coffee
- Starbucks
- Ganchi Plastic Surgery
- Kings (Morristown)
- Braunschweiger Jewelers
As part of her efforts, Devlin has begun working with Alex’s Lemonade Stand, a charity that raises money to fight childhood cancer.
BWS is the first syndrome that Alex’s Lemonade Stand has put its considerable support and influence behind, providing a grant to the CHOP geneticist who works with Devlin’s daughter.
As part of the fundraising efforts, a matching period will run through April 20. During this period, a donor will match every donation made to BWS research. To learn more about BWS and this local fundraising effort, visit www.alexslemonade.org/ourbwsfriends.
