A little relief

Suzie Harrison

“Thanks” begins to sum up the feelings.

Joey Masella and his parents, Laurie and Claudio, are quick to say

how thankful they are to the people of Laguna Beach and the strong

sense of community they have shown their family.

Nothing could be a better example of that than a recent benefit

for Joey at [seven-degrees] that raised about $25,000. The Masellas

say they were overwhelmed at the incredible response.

Ten-year-old Joey was born with Epidermolysis Bullosa, a rare skin

disorder that causes fragility of his skin, causing it to blister and

not heal. His skin turns into scar tissue in all areas of his body,

including internal scaring. It can cause his fingers and toes to grow

together and also cause his throat to close.

Joey has to spend a lot of his time at the doctor’s office. Just

getting the day started with the help of his parents takes extra time

every day.

“I want people to know what his life is like,” Laurie Masella

said. “I don’t know how he does it.”

The benefit was organized by a virtual stranger, longtime Laguna

local Sande St. John.

“I met her about a year and a half ago,” Laurie Masella said.

“Sande had heard about Joey and invited him to a play at Artists’

Theatre.”

St. John called about three weeks before the Aug. 22 event

happened.

“She said, ‘Hi Laurie, it’s Sande St. John and we’re going to do a

benefit for Joey,’” Laurie Masella said. “‘Don’t worry about a thing,

everything is taken care of.’”

They had no expectation about how many people would show up at the

fund-raiser and guessed it would be anywhere from 30 to 50.

They were stunned when more than 300 people came to support their

cause of finding a cure for Joey’s disease.

“I try to take it all in, it’s so emotional -- everything everyone

was saying, talking about Joey,” Laurie Masella said. “I’ve waited 10

years for something like this to happen. I’m elated, ecstatic -- it’s

like a dream come true.”

With Joey’s consummate smile and incredible attitude, one would

never know the unbelievable pain he endures every second of his life.

Laurie and Claudio Masella have made several trips to San Diego

this week to change the casts on Joey’s legs because of blistering

underneath.

The casts, though only a very short-term solution, gives Joey the

ability to walk and the freedom he needs to be mobile and enjoy

activities such as riding a bike.

“He needs something removable that he can wear to school,” Laurie

Masella said. “So far nothing has come close to duplicating the

casts, the doctors haven’t been able to come up with anything.”

The downside is that the casts cause his muscles to atrophy and

can’t be worn for very long.

“With the casts he has a taste of freedom,” Claudio Masella said.

“He’s been playing baseball and basketball. It’s like he’s a

completely different kid.”.

On the Tuesday night before school started this week, like most

Joey was trying to squeeze in every minute he could to do all the fun

things extra time affords.

His friends buzzed by on their bikes and razors begging for Joey

to be able to join them. Joey, too, was pleading with his mom to let

him.

After a couple more requests, Joey got his wish and took off,

grinning, with his friends on a specially designed bike that looks

like an all-terrain type bicycle with two large back wheels attached

to the back.

Laurie and Claudio Masella can’t stop thanking all the people and

local businesses that helped with the benefit.

“He’s given us so much more than you can imagine,” Laurie Masella

said.

What the Masellas want more than anything is a cure.

To help, please make a donation to the Joey Masella Fund at

Fidelity Federal Bank at 310 Glenneyre Street.

* SUZIE HARRISON is a reporter for the Laguna Beach Coastline

Pilot. She may be reached at 494-4321.