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Take a walk for Madylin ... and others

May 23, 2011

When Jarrod and Cindy Wells’ first child was born three years ago, the young couple’s lives took a turn down a figurative path they never expected to be walking.
Now, the Bellingham natives are founders and organizers of an actual walk that will raise money for research on the condition that redirected their focus: Prader-Willi Syndrome.
Their daughter, Madylin, is the one in 16,000 newborns diagnosed with the birth defect, a complex syndrome resulting from a chromosomal abnormality.
The condition causes multiple problems including poor muscle tone, short stature (if not treated with growth hormone), and incomplete sexual development.
But the signature symptom is a constant feeling of hunger — complicated by a metabolism that uses far fewer calories than normal, which can lead to excessive eating and life-threatening obesity.
Neither Jarrod nor Cindy had heard of the syndrome when Madylin was diagnosed at just 6 weeks of age, but it didn’t take them long to learn a lot — including the fact that the Prader-Willi Syndrome Association of New England operated on an annual budget of only about $1,000.
Appalled by the lack of resources and the need for research, they organized the first PWSA New England Walkathon/Silent Auction — and raised $30,000.
They matched the amount the second year and hope to exceed it with this year’s third event, which will take place June 4 at Borderland State Park, 259 Massapoag Ave., North Easton, Mass.
People who can’t do the walk but still want to donate are encouraged to visit the website www.firstgiving.com/pwsaNewEngland and click on the “Get Started” button.
Donations also can be sent to the couple’s address at 19 Hawthorne Road, Norton, MA 02766, in care of the PWSA webmaster. Checks should be made payable to the Prader-Willi Syndrome Association of New England.
A concurrent Silent Auction will begin at 9 a.m., with the last bid at noon, offering items like four Park Hopper passes to Walt Disney World, two JetBlue round-trip tickets to anywhere the airline flies, a fall foliage weekend on Lake Winnipesaukee, tickets and memorabilia related to New England’s professional sports teams, and a Sam Adams “Bucket of Cheer,” which includes a year’s worth of beer. The entire list is on the website.
Proceeds will go to the New England Chapter, with a portion designated to research. Money raised last year also helped send local folks to a national conference and sponsored local gatherings and assistance for families in crisis.
As for Madylin and her family, which includes grandparents Alice and Dan Pultz, Jean and Richard Wells, all of Bellingham, life has been a series of struggles and rewards.
They are grateful Madylin was diagnosed so quickly at UMass Medical Center in Worcester.
“When she was born, she was floppy, like a rag doll,” Cindy, 30, recalled. The low muscle tone was the first warning flag, but it was a breathing problem that put Madylin in the neo-natal intensive care unit.
The combination of symptoms prompted a visit from a geneticist whose DNA tests identified Prader-Willi Syndrome.
“Honestly, after telling us what it could have been, we were happy it wasn’t worse,” Jarrod, 31, said.
However, there have been a host of worries, including several surgeries, like one when Madylin was only 2 weeks old to close an opening in her heart, plus lots of physical and occupational therapy.
Low muscle tone affected not only Madylin’s ability to sit up and move but also her ability to suckle and swallow.
“She had to be shown how to sit up, crawl, walk,” Jarrod said. “Holding her head up took six months. But those milestones mean so much more to our family.”
Prader-Willi Syndrome is a spectrum disorder, which means people can be affected in lesser or greater degrees. Many Prader-Willi children don’t walk until age 4; speech is delayed because of weak mouth and tongue muscles. Some affected persons never walk or talk.
“Maddy just got started saying words last October,” Cindy said, but the little girl was walking by age 2.
Prader-Willi Syndrome can be linked with autism or raise questions of intellectual development, so the Wells family is relieved to watch how Madylin has progressed.
“She is always above her age level” on IQ tests, Jarrod said, which he attributed to early intervention.
She started preschool in the past year and, “She does everything,” Cindy added.
“She goes to ballet class, swimming; she has tons of friends and play dates. She’s a real ‘girly’ girl; she loves makeup and shoes. And she has a sense of humor.”
The latest challenge, however, is daunting. Madylin has begun “seeking,” which means looking for food to quell her insatiable hunger.
“We have to lock up the refrigerator, the trash,” Cindy said, “because she will seek out food wherever she can.”
Because her metabolism is slower than normal, it’s imperative that calories are controlled — not an easy task in a society when just about every holiday, birthday or celebration includes food.
While some parents count calories for their children, Cindy has chosen always to take Madylin’s own food with her.
“I think ahead; always have a plan. She’s ‘allergic’ to everything; that’s how I think of it,” she said.
Through all the ups and downs, however, “It has helped so much to have family and friends support us,” Jarrod said.
“Our friends and family all know her just as Madylin, not Prader-Willi Madylin,” Cindy said gratefully.
Now that they have a second child, 11-month-old Tristan, for whom those milestones of development are coming naturally, Jarrod can’t help but observe, “Mady has had it tough.
“She’s changed my life,” he said, “but she’s the light of my eyes.”

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