St. Martin boy fighting rare skin disorder with fishing rodeo - - The News for South Mississippi

St. Martin boy fighting rare skin disorder with fishing rodeo


By Trang Pham-Bui – bio | email

D'IBERVILLE, MS (WLOX) - Marley Roberts needs extra protection every time he heads outdoors: Moisturizer to lubricate his skin, a wet bandana to keep him cool and a large hat.     

The nine-year-old St. Martin boy suffers from "Lamellar Ichthyosis," a genetic condition so rare, it affects one out of every 300,000 children.

"I'm all peely and stuff, and I can't sweat, which means I'm really red," said Marley.

His skin is so sensitive he can't use sunscreen. That means he can only spend a few minutes in the sun.

"When I'm in the sun, I get overheated, really red. And I'm really thirsty," said Marley. "These people passed me and one of them was like 'ugh', and most people say I have a sunburn and they feel sorry for me and stuff like that."

Marley can't play football, baseball or any other outdoor sport. But that hasn't stopped him from enjoying life. He's a gifted student, and he's quite a talented musician. He can sing, play the keyboard, drums, guitar and mandolin. Marley's favorite group is the Beatles. In fact, he can answer any trivia question about the Fab Four.

When asked to name all four Beatles, Marley quickly responded, "Well, technically there's exactly six Beatles: John Lennon, Paul McCartney, George Harrison, Ringo Starr, aka Richard Starkey, and the unknown two Beatles, Stuart Sutcliffe from 1960-1961 and Pete Best, who was the original drummer."

Now that's one true fan. His other passion is fishing. So Marley and his grandfather are hosting a Kids Fishing Rodeo Saturday to raise awareness about the disorder and money for research and treatments.

"I don't think they will find a cure for this, but we're hoping they will find a way to prevent it. If they know they have a genetic disorder, they can correct that before they're born and not have to worry about it after and spend the rest of their life living with it," said Marley's grandfather Dr. Hank Roberts.

Ironically, Ichthyosis means fish-skin, because patients have scaly skin.

"We're giving all the proceeds, all the money to the Ichthyosis and the research lab," said Marley. "It's for all the kids in the world with Lamellar Ichthyosis."

The Kids Fishing Rodeo will be held Saturday, June 19, at the Ocean Springs Harbor Landing Yacht Club. It starts at 6 a.m and ends with an awards ceremony at 5 p.m. There is a $5.00 fee to enter.

For more information, call (228) 875-9645 or (228) 875-0482.

Copyright 2010 WLOX. All rights reserved.

Powered by Frankly