Boy battles rare genetic disease

Prader-Willi Syndrome awareness walk is Saturday

Boy battles rare genetic disease

POST FALLS - A.J. Houghton thinks he is hungry 24/7.

Prader-Willi Syndrome, a leading genetic cause of life-threatening childhood obesity, makes the Post Falls Middle School student feel that way.

"The feeling of hunger never goes away," said Shanna Houghton, who with husband Terry adopted A.J. when he was 6. "It is not defeatable. Diet pills do not work, stomach bypass surgeries do not work."

Shanna has organized a "One Small Step for Prader-Willi Syndrome" awareness walk for Saturday at Stateline Speedway off Beck Road near Post Falls from 10 a.m. to noon. The public is invited.

"My prayer is that through research something can be found to turn off the hunger," Shanna said. "That is why I am walking. That is why I am asking others to walk. Until my son can feel full, he will not be able to find independence."

PWS affects behavior, pain tolerance, sleep patterns, hormones, appetite, muscle strength and learning.

When the Houghtons gained guardianship of A.J. eight years ago, he weighed nearly 100 pounds at age 6. He now weighs 90.

"Because of exercise, A.J. is eating around 1,600 calories a day, which is almost unheard of in the PWS world," Shanna said, adding that many with PWS don't get to eat more than 900 per day.

A.J., a fan of Boise State football, the Dallas Cowboys, Gonzaga basketball and NASCAR, stretches every morning and gets on the treadmill for 20 minutes.

"He is learning that this exercise allows him to eat more than possible if he did not exercise," Shanna said.

Those with PWS utilize calories at 60 percent of the rate of a typical person.

"Talk about a cruel double-edged sword," Shanna said. "He feels hungry all the time, but due to his metabolism he cannot eat as much as the next person."

A routine schedule is important to A.J. Meals are served at the same time every day. He gets a growth hormone shot every night.

Watching A.J. takes constant supervision, including ensuring he's not sneaking food.

"A.J. snuck into the kitchen a few years ago and ate three bananas - peel and all to hide the evidence," Shanna said.

The Houghtons are hoping for a PWS research breakthrough so A.J. and others affected will be able to live more independently.

"We both believe with every fiber of our being that A.J. was meant to be ours and us his," Shanna said. "It is challenging, but so very worth it."

Participants can register at the event or register or donate to PWS research at http://onesmallstep.fpwr.org/dw/walking/location/353.

Awareness walk is Saturday

There will be a "One Small Step for Prader-Willi Syndrome" awareness walk on Saturday at Stateline Speedway off Beck Road near Post Falls from 10 a.m. to noon.

To support or participate in the walk go to http://onesmallstep.fpwr.org/dw/walking/location/353 and click on register. People can donate to research efforts on the website. Participants can also register at the walk. There is no entrance fee.

Info: Shanna Houghton at 929-2888 or shanna_terry@yahoo.com

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