Layne Parks is an 8 year-old boy with a genetic disorder called Prader-Willi Syndrome. Only one in about 25 thousand people are affected by it. He may seem like there’s nothing wrong, but his mom, Linsey Barone explains how it’s a completely different story on the inside.
"The main thing with Prader-Willi Syndrome, also known as PWS, is that he never feels full. So his stomach feels like he’s starving 24-7. He could sit down and eat a plate of food, and his stomach would still feel the same."
Layne’s problems don’t end there. "He suffers from scoliosis, he had a Mickey tube in his button for 2 years. He didn’t start walking until he was 4 years old, and there’s a bunch of other challenges that come along with it, but he hunger is so consuming in his brain that it distracts him from a lot of things… from things that he should be doing in everyday life."
Linsey is constantly traveling to Doctors appointments in New Jersey, Philadelphia, and Florida. It’s a lot of time, expense, and it’s mentally draining.
"There’s no pill. There’s nothing out there right now that he can take that will take away that hunger."
There is a way for all of us to help. Moto Mission Powersports is a new organization set up to bring motocross racing for a reason. John Dreimiller and Jamie Tuttle started the organization as a way to help local families impacted by adversities. Jamie Tuttle tells us a portion of the proceeds raised goes directly to the families, and the money is used for whatever they wish.
"You forget that these people are struggling every single day. Day in and day out, and they don’t complain. They’re humble. They don’t ask for anything, and it’s like… those are the one’s too that it’s like awesome to be able to honor them and just recognize them, show love to these people that are going through these battles every single day."
The spectator gates open at the Lanterns in Clayville starting at 6p.m. Admission is only $10. , and a portion of the proceeds goes to benefit someone from our local area with adversities.
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