High Point family raising funds for rare disorder

Posted on: 9:56 pm, February 28, 2013, by , updated on: 10:57pm, February 28, 2013

HIGH POINT, N.C.–The past four months have been hard for Suzanne and Joe Collins. On October 21, 2012, their son L.J. died after being hit by a car on Interstate 85 in Davidson County. His parents said it was a tragic ending for a kid who faced a lifetime of struggle.

“It’s been sad,” Suzanne said. “It’s a heartache. He was our first.”

L.J. had Prader Willi Syndrome, a rare genetic disorder that causes learning disabilities, low muscle tone and the constant feeling of hunger.

“They never know when they’re full, so they’ll do anything at any measure to get food,” Suzanne said.

The night L.J. was killed, Suzanne said her son was in search of food. L.J. woke up at 3 a.m., walked out of his group home, ran to a gas station about a mile away, and stole ice cream. Suzanne said L.J. sat down on the interstate to eat it and was hit by a car.

While the Collins don’t blame the group home were L.J. lived, they do believe their son would still be a live if was in a specialized facility just for kids with Prader Willi Syndrome.

“It’s such a complex disorder, you can’t mix the other special needs children with him,” Suzanne said. “Other special needs kids may not need their food locked up whereas Prader Willi children need constant surveillance and their food needs to be under lock and key.”

While the disorder was part of who L.J. was, it did not define him. He loved sports, coloring, watching movies and playing with his sisters. “L.J. was a sweet kid. He’d always make a smile on peoples’ faces,” Suzanne said.

Fueled by L.J.s memory, the Collins organized a 5K Memorial Walk/ Run for Saturday, March 2. It begins at 9 a.m. at the High Point Parks and Recreation Track.

The Collins eventually hope to raise enough money to build a special Prader Willi group home for children in North Carolina.

To learn more about L.J, or to sign up for his 5k, visit their website:

http://ljs5kmemorial.wix.com/ljsfoundation

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