Raising hope for boy’s family

Barbara Diamond

Joe Masella is the stuff of which heroes are made. Pain,

excruciating pain is the 10-year-old North Laguna boy’s constant

companion. He deals with it, exhibiting the kind of courage that awes

his parents, his friends or anyone else who gets to know him.

Joe -- his folks call him Joey -- was born with epidermolysis

bullosa. EB is a rare, incurable disease that covers his body inside

and out with blisters -- blisters that don’t heal but keep coming

back until they are replaced by scar tissue that fuses fingers and

toes together and closes the throat. Severe EB wounds resemble

serious burns. Joe’s case is severe.

“The thing that bothers me most is people staring,” Joe said.

This from a kid who has had more than 30 operations in his short

life. The Laguna Beach Police Department recognized his gallantry

last year when Chief James Spreine swore in Joe as a Special Officer.

“I received a medal of courage as a police officer for one act,”

said Capt. Danell Adams. “Joe shows courage every day -- every single

day. He is what the word courage defines.”

Thursday, [seven-degrees] will conclude its summer concert series

with a fitting grand finale, a benefit to raise funds to help defray

the medical expenses that will continue for as long as Joe lives or

until a cure is found. Former Stray Cat Lee Rocker, whose daughter is

a classmate of Joe’s at El Morro Elementary School, will entertain.

Sande St. John and Sandy Thornton are coordinating the event. Joe and

his parents, Laurie and Claudio will attend.

“I am thrilled that people will get to know about EB,” Laurie

said. “It’s an ‘orphan’ disease with little money funded for

research. It’s maddening and frightening. I have to believe a cure

will be found within Joey’s lifetime.”

She recently read of clinical trials in Europe of research that

sound promising. She would love to take Joe there, or anywhere that

could give him relief.

“My heart breaks because I see what he goes through,” Laurie said.

Joe can’t scratch an itch without injuring his skin. Even his

twice-a-day baths can be torture. However, moving water doesn’t have

the same effect and the Masellas are hoping to buy a whirlpool bath.

Or get one donated.

Walking is a challenge for Joe, running the jog-a-thon at El Morro

is an unbelievable triumph. His schoolmates gave him a standing

ovation when he completed his five laps.

“Pain is all he has ever known,” said his mom. “He describes it as

knives or pins being stuck in him. He says it’s in the bone.

“And yet, he is bright, witty and wise beyond his years. Like any

other 10-year-old he enjoys video games, hanging out with friends and

shares with his father a love of sports.”

Joe dreams of competing in the Soap Box Derby and he wants to be

an entertainer when he grows up.

With the aid of casts on his legs, Joe recently got a taste of

what other kids take for granted. He shot some hoops in the

schoolyard. The casts protected his feet, which are in constant pain

from blisters, skin loss and fusing.

“He was depressed when the casts came off,” Laurie said. “I keep

looking for shoes that will shelter his feet. I have come home with

30 pairs for him to try.”

The Masellas also are searching for a medical specialist who might

be interested in helping alleviate his foot problems. As with his

finger’s Joe’s toes have fused, curled back over the top of his foot.

Joe will undergo his eighth hand surgery at the end of August, but

feet and hands get treated differently, Laurie said. Mostly Joey

refuses analgesics.

“They don’t work so why bother,” he says.

Joe’s pain tolerance is beyond ordinary comprehension.

“It’s heart-wrenching to watch him deal with this,” said dad,

Claudio, who works with marble and granite in the construction

industry. “But it is harder on my wife than on me.”

Laurie, who once considered nursing as a career, is on duty 24/7

with just one patient. “Joey is what keeps me going,” she said. “I

tell him that he was put here for a special reason.”

Joe’s feet, legs and forearms require fresh bandages every day.

Getting the dressings changed is painful. But what isn’t for this

remarkable child?

“He’s knows he is different,” Laurie said. “I think he sensed it

almost immediately. People have called him an old soul. He has a

wisdom beyond our understanding.”

The medical profession doesn’t know much about EB. Laurie believes

that knowledge and a cure will come only through genetic research. EB

is a genetic disease, the onset is at birth or soon afterward.

Although neither of Joe’s parents have the disease, both are

carriers, something they didn’t know when they married and talked

about having a large family.

The gene that causes the disease was only identified five years

ago. To make it even more difficult, the gene can vary in different

families.

Now members of Laurie’s family get tested before they have

children. Everyone should, she said.

“I had a wonderful pregnancy,” Laurie said. “Everything looked

fine in the amniocentesis. I had a C-section, which turned out to be

a blessing in disguise.”

When Joe was delivered Feb. 11, 1992, he was missing 60-to-70

percent of his skin. It probably would have been even worse with a

normal delivery. Doctors at Huntington Memorial Hospital had no idea

what to tell his mother.

“I knew something was wrong from their faces,” Laurie said. Three

days later, the infant Joe was transferred to Children’s Hospital in

Los Angeles. He was placed in isolation, swathed from head-to-toe in

bandages.

“The doctors at Children’s Hospital called him their angel baby,”

Laurie said. “They knew he was in pain but he just lay there, never

crying unless he was touched.

“You can’t help but ask, why this child. Then you realize, why

not. Heartbreaking things happen to children.”

For years, the Masellas had to take Joey to Stanford University in

Northern California for treatment, because no local doctor or

hospital had the knowledge to treat him. They now have a doctor in

San Diego County. As a pre-schooler, Joe went to R.H. Dana School in

Dana Point, which has facilities for special needs children. But Joe

was mainstreamed when he started kindergarten.

“I worried about how the kids at El Morro would react to Joey,”

Laurie said. “But they have been wonderful. His friends don’t even

see the bandages.”

Now she worries about Joe graduating to middle school.

New challenges are nothing new in a lifetime of challenges,

bravely faced and endured.

“Time alone does not heal all wounds,” Laurie said.

Money for research and care helps.

The benefit will begin at p.m. Thursday at [seven-degrees], 891

Laguna Canyon Road. Tickets are $35 and may be purchased at the

Chamber of Commerce, 357 Glenneyre St.; Hobie Sports, 294 Forest

Ave.; First Team Nolan Real Estate, 900 Glenneyre St.; or Sound

Spectrum, 1264 S. Coast Highway.

To donate items to be auctioned at the benefit, call Kathy Hyland,

499-9117.

Donations can be made to the Joey Masella Fund, Fidelity Federal

Bank, 310 Glenneyre St. For more information, call Sande St. John at

499-9429, Sandy Thornton at 290-4409, Jeanette at 499-1963, Kathy at

499-0117 or Melinda at 481-9510.