Southern Maryland News

Annual event to raise funds, awareness about rare genetic disorder

Annual event to raise funds, awareness about rare genetic disorder

- By SARA NEWMAN snewman@somdnews.com Twitter: @indy_community

Many people struggle with healthy eating and the desire to lose a few pounds, but for those with a rare genetic disorder called Prader-Willi syndrome, the desire to eat is overwhelmi­ng — and the feeling of starvation is constant.

One family aims to spread awareness of the syndrome in Southern Maryland through a fundraiser at Regency Furniture Stadium during the Aug. 27 Blue Crabs baseball game. The Taylors of King George, Va., with the support of their employer FGS, LLC — a secure informatio­n systems company in La Plata — hope to raise funds and awareness for Prader-Willi research.

Addison Taylor, 6, was diagnosed with Prader-Willi syndrome soon after she was born. Her mother Michelle, father Curtis and brother Darryn, 13, decided they were going to blaze into their “new normal” accepting that Addison’s diagnosis didn’t change who she was.

“Our biggest fear with Darryn was that he would get the flu or a cold,” Michelle said of her different experience raising her son from her daughter. “[But] no matter what Addison was born with, she was our child and that was that.”

Prader-Willi syndrome, or PWS, is a rare, complex genetic disorder that results in low muscle tone, cognitive disabiliti­es and a never-ending feeling of hunger that can result in chronic overeating and life-threatenin­g obesity. According to the Prader-Willi Syndrome Associatio­n, it is thought that one in 12,000 to 15,000 people worldwide has the syndrome.

The syndrome involves three stages that occur throughout a person’s lifetime. There is 1A — failure to thrive and 1B, where the child continues to grow and has a normal appetite. The second stage includes 2A where a child will have a regular appetite and doesn’t have an over-interest in food or anxiety about it; but in 2B, the child will start to develop an over-interest in food and grow anxious over it. That’s where Michelle says Addison is now.

“We deal with, on a daily basis, extreme food anxiety. When she wakes up it’s ‘When am I gonna eat breakfast? What am I having for breakfast?’ and she’ll ask me what we’re having for dinner two nights from now and if I change that it’s a meltdown but it’s not a meltdown that she can control,” Michelle said, adding that Addison is on a strict eating schedule throughout the day that her body has become accustomed to. “Food is constantly on her mind, it’s all consuming.”

The third phase is characteri­zed by an insatiable appetite that makes it necessary for families to padlock refrigerat­ors and trash cans in an attempt to keep PWS sufferers from overeating. The Taylors say Addison will likely enter this phase between the ages of 8 and 10, and they are preparing for it now.

“Can you imagine feeling starving all the time? That’s what it will be like for her,” Michelle said. “We can’t stop the insatiable appetite but our hope is as she enters that stage 3 she will know what is not good for her ‘special tummy.’”

The Taylors have told Addison about her “special tummy” all her life and she understand­s she should not have certain foods. Chips, cookies and junk food are not kept in the house, which has made the rest of the family’s diet healthier. Addison’s diet in particular is kept as raw and organic as possible.

The temptation to eat — and to eat unhealthy foods — is everywhere outside the home and Michelle said informing teachers, administra­tors, friends and other parents of Addison’s diagnosis is difficult but necessary. Cupcakes for a classmate’s birthday are not allowed, nor is candy at birthday parties.

“In a world we live in where food equals love and food equals social gatherings and holidays and birthdays... we grew up feasting and loving it, but we really have had to almost eliminate all of that because food is not love for Addison,” Michelle said.

Michelle said she has already seen proof of Addison’s understand­ing about her “special tummy,” when she’s denied candy from a friendly stranger or told her parents about treats mistakenly put in her backpack at school, which gives Michelle and Curtis hope for an unknown future.

“The best thing we can do is teach her now so she will be prepared... We can’t cure her or take [PWS] away, but we can give her the best quality of life we can,” Michelle said.

Addison is involved in occupation­al, physical, speech and hippothera­py and she travels to Florida twice a year to see a specialist. Because of early interventi­on and the care she has received from both doctors and her parents, Addison is doing well.

“Addison is such a lovable and creative little girl. She loves to color, paint, sing, dance. She is just a joy to be around. She’s a joy, a blessing and a miracle,” Michelle said.

The One Small Step/Paint the Park Blue event will benefit the Foundation for Prader-Willi Research, and Michelle said 100 percent of the funds raised will go towards research.

All ticket sales purchased with the code FPWR for the Aug. 27 game will donate $6.50 to the foundation. Support will be seen throughout the stadium through the celebrator­y lap around the ball field to the balloon release, a silent auction and opportunit­ies to learn about PWS around the concourse.

“We wanted to pull in the general public, fundraise and have fun so the baseball game seemed like a home run to us,” Michelle said. “Last year so many people stopped to ask me about Prader-Willi and that gave us a sense of satisfacti­on that we were doing what we could to inform people about this.”

For more informatio­n about the event, go to onesmallst­ep.fpwr.org/ dw/walking/location/1814.

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 ?? SUBMITTED PHOTOS ?? Addison Taylor, 6, is pictured with her “cake” made up of fruit on her sixth birthday. Addison’s family, along with FGS, LLC, will host an event to raise funds and awareness for Prader-Willi Syndrome research in August.
SUBMITTED PHOTOS Addison Taylor, 6, is pictured with her “cake” made up of fruit on her sixth birthday. Addison’s family, along with FGS, LLC, will host an event to raise funds and awareness for Prader-Willi Syndrome research in August.
 ??  ?? Addison Taylor, 6, was diagnosed with Prader-Willi syndrome soon after she was born. It is a rare, complex genetic disorder that results in low muscle tone, cognitive disabiliti­es and a never-ending desire for food.
Addison Taylor, 6, was diagnosed with Prader-Willi syndrome soon after she was born. It is a rare, complex genetic disorder that results in low muscle tone, cognitive disabiliti­es and a never-ending desire for food.

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