Mom seeks help to raise awareness, funds for son's rare disease

SUGAR LAND, Texas – Prader-Willi syndrome is not common, but the condition, which can lead to severe overeating, has had a big impact on one little boy in Sugar Land.

Jackson Gilliam, 5, doesn't know yet that the way he feels is any different from other kids.

"It's hard with birthday parties, and family gatherings, and always having to ask, 'Well, what are you serving?'" his mom Katie said.

Most people with Prader-Willi syndrome are constantly hungry because their bodies don't register the feeling of being full. It can lead to extreme efforts by parents to keep food away from their kids.

"It can get so bad that you have to lock refrigerators or cabinets," Katie Gilliam said.

She said when her son was born, they knew something wasn't right.

"He could barely eat. He didn't open his eyes. They don't really move," she said.

The syndrome causes low muscle tone and weakness at birth, so babies tend to not eat at first. When the Gilliams figured out Jackson's diagnosis, he went into strength therapy.

Like most kids with the condition, he’s gotten strong enough to eat, but the syndrome triggers his body to continue eating and will one day result in a constant urge to overeat.

"They can literally eat until their stomach ruptures because they have no control over it," Katie Gilliam said.

Katie wants more focus on treatments for kids like Jackson because right now there are none.

"It's hard when you're impacted by a rare disease there's not a lot of money going towards," she said. "There's not a lot of interest. Big pharmaceutical companies don't have a reason to get involved because it's not going to impact the masses."

So just like any mother on the hunt to help her child, Katie is working to set up a fundraising event, a gala called Live Life Full, in the fall to contribute to research that could change Jackson's fate.

"There's a lot of big things going on and I like to tell people that I'm literally watching his future change," she said. "We're getting to be a part of that and we're really excited about that."

Click here for more information on how you can participate in the Houston gala for Prader-Willi syndrome research.