Sherburne Christmas light show benefits child with rare genetic disorder

SHERBURNE – Ever since he was 15, Rick Crowell has been into Christmas lights, enthusiastically hanging them up every holiday season with a friend. Crowell later learned he could program his Christmas lights to music – $10,000 later, and countless hours of work, his yard on 373 New Turnpike Road is now home to a spectacular light show visible from as far away as Hwy. 80.
The light show features a gigantic 27-foot tall Christmas tree made of up of thousands of red, white, blue, and green lights, as its focal point. A huge American flag made up of even more lights stands next to the tree as Crowell’s tribute to the troops. The lighting display is made up of over 35,000 lights, programmed to dance to the tone of music Crowell has remixed, which can be heard at 107.7 FM. The show runs from 5 to 10:30 p.m. every night on 35-minute loops with every 30 seconds of run time costing Crowell around eight hours to program.
Over the past five years, Crowell has dedicated his light show to local children in desperate need of medical aid. Crowell asks people drawn to his light show to find it in their hearts to make a donation. Last year, Crowell dedicated his light show to a Sherburne child born with an undeveloped heart valve.
“We were able to raise over $6,000 to help with her surgery and she is doing much better now,” said Crowell.
This year, Crowell has chosen to sponsor Layne Parks, who suffers from Prader-Willi Syndrome, after Parks was nominated by a number of community members. Prader-Willi Syndrome results from a defect in chromosome 15, with a the most notable symptom being the never-ending feeling of starvation.
“Right now Layne is in what they call the honeymoon stage,” said Layne’s mother, Linsey Grover. “Even specialists aren’t sure why, but between the age of two and six, people with Prader-Willi Syndrome begin to never feel full, and are starving forever.”
At the moment there is no cure for Prader-Willi Syndrome. Layne’s treatment will involve physical therapy, speech therapy, nightly injections of growth hormones and testosterone, as well as 24/7 supervision, and costly visits to specialists in Florida, Philadelphia, and Long Island. Individuals suffering from Prader-Willi require supervision at all times because they run the risk of literally eating themselves to death. Describing the feeling people suffering from Prader-Willi Syndrome have as hunger is a gross understatement, because the feeling of starvation is so powerful and incessant, it drives them to literally eat anything they can put in their mouths regardless of whether it is even edible or not, with the feeling never dissipating or relenting.
A donations box is placed at the end of Crowell’s driveway and checks should be made out to Linsey Grover. “It doesn’t matter how much people can donate because every cent counts,” he said.
“Every parent has things to worry about, but we just have to work harder and have a few more heartaches” said Grover, optimistically referring to the constant struggle to keep Layne healthy, a struggle wrought with never ending financial woes. “We are so grateful for all of the community support and Rick and his family for all their time and dedication,” she added.  
Next year, Crowell plans to expand his light show, constructing a 35 foot light tree on top of the already existing 27 foot one. This year’s light show will run automatically every night untill Dec. 31, after which point Crowell will turn his lights on at special request.

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