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12/22/2015 11:00 PMDianna Schatzlein-Ahern has four children—a 17-year-old son Ryan, a 13-year-old daughter Jamie, and 11-year-old twins. While four children would keep any parent busy, Dianna has an added challenge as the twins, Stevie and Eddie, have Prader-Willi syndrome (PWS) and are on the autism spectrum.
“It’s so overwhelming,” says Dianna. “They have so many health issues, they get obese, and they have severe mood swings, but they’re so lovable and like little mayors everywhere they go.”
The twins spent two months in the hospital when they were born and tested negative for PWS syndrome. They had low muscle tone and had birth-to-three services and a variety of therapy. After they started school, they started to get worse. Dianna pushed for a diagnosis, visiting a number of specialists before her boys were finally diagnosed with PWS.
“We knew something was wrong, but the test had been negative,” said Dianna. “I knew I needed to know what was wrong with them, but when I found out, then I knew I was really in trouble because where do you go from there?”
According to the Prader-Willi Syndrome Association website (pwsausa.org), “PWS is a complex genetic disorder affecting appetite, growth, metabolism, cognitive function, and behavior. 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. Those who have PWS need intervention and strict external controls, sometimes including padlocking access to food, to maintain normal weight and to help save their lives.”
With Eddie and Stevie demonstrating most of these characteristics, Dianna has a full schedule of caring for the boys. Dianna and her family lived in Orange for years, but after she and her husband got divorced, Dianna and the twins moved to East Haven where Dianna grew up. Even while living in Orange, Dianna was in East Haven visiting her parents every day until they passed away last year.
Dianna is in the process of meeting with the staff at East Haven Academy in hopes of transferring the boys from their school in Orange. Dianna currently drives the boys to and from school in Orange.
“They’re in 6th grade, but only at a 1st-grade level,” says Dianna. “They’re with peers for homeroom, but the rest of the time, they work—they do the food cart, sell the food, they love to vacuum so they do that. It’s only a little bit of academics and they’re starting to do bongo drums, but to me, that’s not good enough. They’re so smart, but I think they belong in a different type of school where they can flourish. Eddie can take apart something electrical and put it back together; Stevie has music in him. He loves to sing. And there are no exercise programs, nowhere for them to go. Children with Prader-Willi deserve more than what they get.”
Dianna has tried to supplement their education and exercise with after-school programs, but the cost has become prohibitive. The family utilized the state’s respite services to assist in the costs, but much of the funding was recently cut. The twins were enrolled in an after-school program that engaged them in activities and helped them get some exercise until 5:30 p.m. each day.
“The program was $500 a month per child,” says Dianna, though she’s worked to find more affordable options. “Last summer they went to the YMCA camp in Milford and had the time of their lives. The people there were so good to them. Plus, my 17-year-old son was a counselor there, so it was extra special.”
Another challenge Dianna faces is spending time with her two older children, who live with their dad in Orange. While the twins were in the their after-school program, she was able to spend one-on-one time with her daughter.
“Now I pick her up and we pick them up and do something together,” says Dianna. “My son and daughter are so good with their siblings, but it’s tough on them. My daughter Jamie does a program with special needs students at her middle school and my son works at an after-school program. I tried to raise them to love everybody and give a little attention to everyone.”
Eddie and Stevie require a lot of attention. Dianna spends much of her time caring for their basic needs from hygiene to exercise. While the boys are at school, she is often making appointments with doctors and specialists and communicating with the school.
The after-school hours are dedicated to driving to appointments. Eddie and Stevie have already had many medical procedures and surgeries. Stevie just had surgery to repair his leg that was causing him to use a walker and a wheel chair. In addition to growth hormone treatments twice a week in Ansonia, they recently began a research program in Long Island.
“We’ll be going there once a week for 60 weeks. We’re constantly in the car,” says Dianna. “I spend more time and money on gas than anything else between appointments in Hartford, Ansonia, Long Island, and Norwalk, plus the school in Orange—I basically live in the car.”
With so much of their time scheduled, there’s not much time left for recreation or exercise. Dianna has tried to find ways for her 180-pound-plus boys to get exercise, but the effects of PWS make it difficult for the boys as they are too big for a regular playscape in their backyard, they are not coordinated enough to ride a regular bike and too big for training wheels, and they have trouble with stamina during even a short walk.
“They love swimming and lived in the pool last year,” says Dianna. “I’d love to get them a three-wheel or four-wheel bike so we can ride up and down the sidewalk for some exercise. They want to ride bikes and be on the playground. It’s what they deserve.”
Dianna has also begun to look into therapy dogs, but with her commitment to caring for the boys and their schedule of appointments, being a mom is a full-time job for Dianna. The boys are on disability, but money is still a struggle. A GoFundMe page was established to help defray the expenses. According to the GoFundMe page, “Any funds received would help support an after school program, to help their mom with gas money for the many doctor trips, and to help purchase four-wheel bikes or a backyard playground for them.”
While coping with the struggles of PWS has been difficult, Dianna finds comfort in her family and friends, who have been a great support system to her. Despite the fact that Eddie and Stevie have faced many tough battles, she loves seeing how happy they are.
“I don’t know what I did or how I did it, but they know they are so loved—they are the happiest kids on earth,” says Dianna. “They call me ‘queen mom.’ They call me their best friend and it shouldn’t be that way, because they should have other people, their own friends.”
Dianna hopes that by raising awareness about PWS, people will see beyond her twins’ struggles. She also hopes that by raising awareness, there will be more opportunities offered to kids who suffer from PWS.
“People just see a big, heavy kid who is not like the rest of them,” says Dianna. “They’re very sick twin boys, but I just want them to have a good life like everybody else. They need exercise. They need to be like regular children. Why can’t we have something for just for Prader-Willi children?
“They want to be firemen, they want to be landscapers, they want to drive, and it breaks my heart,” says Dianna. “I don’t know where they’ll be or what they’ll do. I don’t know what their future is going to be, but I’ll continue to be their biggest advocate and their biggest supporter.”
For more information, visit www.gofundme.com/56afgdak.