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Boy in the Hood
 Spaceman headgear helps 12-year-old
   fight chemical that kept him out of school

Boston Globe
By Gloria Negri, Globe Staff, 06/10/98

RURO - Joseph Souza doesn't mind when people stare at him in his new spaceman-style hood at the supermarket, do double takes when he wears it on busy city streets, or ask him if he's an astronaut.

That's because the hood has made it possible for the 12-year-old to go places he hasn't been able to go for the last six years since having severe allergic reactions to chemicals.

''I would have worn a clown suit with a fish jumping out of the hat if it meant I could come back to school,'' he said.

Next week, Joseph will wear his hood when he fulfills a dream he thought would never come true: to graduate with 21 other sixth-graders at Tuesday's commencement exercises in the Truro Central School gymnasium.

It was only last February that Joseph, thanks to the hood, was able to return to the school he had left six years ago, back when he was in the first grade. The school had been renovated in the summer of 1992, and the chemicals used in the construction, in fire retardant in the walls, and in the adhesive in the new carpeting adversely affected him.

''Joseph wasn't in the building two hours before his eyes became irritated and his throat squeaked like a puppy dog's,'' recalled Cheryl Souza, 41, Joseph's mother. ''His eyes were burning and itching so much he had to blink all the time. The sunlight bothered them. He started getting ear and sinus infections.

''He'd go to school for three days and be home sick for a week. We were desperate,'' she said. ''It depressed Joey, who is a real little scholar, that because his eyes were so irritated, he couldn't read or write well. One day he came home from school and told me, `This was the worst day of my life.'''

William and Cheryl Souza took their son to an allergist on Cape Cod who suggested he was allergic to plants and animals. But the medicines the doctors gave him didn't work, Cheryl Souza said. The Souzas' other son, Jeffrey, 9, is not chemically sensitive.

William Souza, 45, a North Truro lobsterman, couldn't even take Joseph on his lobster boat because of the diesel fumes.

In 1993, the Souzas brought Joseph to Dr. Thomas LaCava, a West Boylston specialist in environmental medicine.

''When the doctor put a drop of formaldehyde under Joseph's tongue, he showed the same reactions he had in school,'' his mother said. ''When he increased the dosage, Joseph picked up a chair as if to throw it. This is so contrary to his nature.''

LaCava diagnosed Joseph's problem as ''multiple chemical sensitivity syndrome'' to such agents as formaldehyde, chlorine, phenol, and natural gas.

In a telephone interview, LaCava said 10 to 30 percent of the population has the same syndrome, with the intensity varying according to individual tolerance. ''Most people who have it,'' he said, ''are not aware of it. They think it's psychotic or just don't know what to think.'' If Joseph had not been diagnosed, LaCava said, ''he would have been described as hyperactive or taken a bad rap.''

The Souzas never took action against Truro Central ''because as soon as we brought them evidence that we were right, that it was formaldehyde, they brought in two different companies to check the classrooms,'' Cheryl Souza said. ''Joseph's classroom was found to be the highest in formaldehyde content. The supply room wasn't even as high.''

With his parents' approval, Truro Central principal Brian Davis arranged for Joseph to be transferred into the second grade at Provincetown Veterans Elementary School. The school had no carpets at the time.

''My first year there was fine,'' Joseph said. ''The second year, they sprayed pesticide and it affected me, so I had to be home-tutored for about two months. The next year, they put rugs in, so I had to be out a long time.''

Joseph stayed at the Provincetown school until the fifth grade, but things got so bad that Truro Central arranged video-conferencing for him at home. ''Joe is an incredible guy and won the national geography bee for our school doing tele-conferencing,'' Davis said. ''But he missed the social interaction at school.''

To remedy that, Joseph's parents drove him back and forth to Truro Central twice a day, for recess outdoors and for lunch, where the school had put filters in the cafeteria. Joseph loves basketball and the school set up a schedule so he could attend gym. But the gym floor was refinished every summer so he had to wait several months to use it. Now the gym has filters.

Last December, Davis heard by chance of a farmer who wore a hood to protect himself from pesticides. The hood had been developed by Minnesota Mining and Manufacturing Company for industrial use. Davis contacted James R. Squadrito, a senior account representative in the occupational health and environmental safety division of 3M. LaCava, Joseph's doctor, thought the hood worth trying.

Soon, Joseph had his own hood and returned to school within minutes of its arrival. His brother, Jeffrey, put a smiley face on the calendar that day.

White and falling loosely on the shoulders, the hood resembles those worn in the 1995 movie ''Outbreak'' by germ-fighters tracking a deadly virus.

''It's a miracle,'' said Joseph, who finds that his only problem with the hood is that looking down, ''I can only see to the tip of my nose.''

The hood is made of Tyvek with a plastic face window. A belt around Joseph's waist holds a filter cartridge of activated charcoal on one side and a battery-powered motor on the other; together they weigh 6 pounds. The hood was trimmed in the back to accommodate his backpack.

''We call Joseph our canary in a coal mine,'' Cheryl Souza said, hugging her son.

The $600 hood, with its hoses and waist packs, is a big savings for the school department. The computer system for the video-conferencing Joseph was having at home was costing the school system $6,000 a year, Davis said, compared with the $1,000 yearly maintenance for the hood's cartridges, filters, and batteries.

Now that the reason for the hood has been explained to them, students at Truro Central think it's cool. Next year, Joseph will go to Nauset Middle School in Orleans, a newer school where he will change classrooms instead of having one homeroom as of now. Davis said the logistics of that are being worked on.

As for Joe Souza, the hood has changed his life. Not to mention how it has improved the lives of his family.

With gusto, he will rattle off the things he's been able to do with the hood that he couldn't do before. He can return to attending church with his parents and Sunday School at Provincetown Methodist Church. He can go back to being a disk jockey at Provincetown radio station WOMR, where he and his brother, Jeffrey, have a Saturday morning DJ show.

And he can go back to Boy Scout events indoors and to meetings at homes of other scouts. (He continues his weekly violin lessons in Wellfleet, where he breathes with the aid of a portable oxygen tank because the hood would obstruct his playing.)

Even with the hood, the Souzas have to be cognizant of the chemicals in almost everything. ''Formaldehyde is found in so many things,'' Cheryl Souza said. ''Toothpaste has fluoride, so Joseph brushes with baking soda. I wash my house with vinegar and baking soda, but even with plain water it affects Joseph. I can't wash the walls because it seems to bring out some kind of chemical and Joseph reacts. If someone comes in wearing perfume, I have to ask them to leave, or get Joseph out of the house.''

A few years ago, the Souzas won a battle with a funeral company that wanted to locate nearby. They feared what the formaldehyde would do to their son. ''Joseph had to go through special tests to prove that he is very chemically sensitive,'' Cheryl Souza said.

As for the future, the Souzas hope that a treatment will come along to cure Joseph, but, William Souza said, ''the doctors tell us he won't outgrow this.''

Through it all, Joseph Souza has exhibited a maturity beyond his years. ''I've got parents who taught me always to take the good with the bad and all those good old sayings,'' he said, doffing the hood that has now become a part of him. ''They kept me in line. They're some of the best parents there are.''

This story ran on page D01 of the Boston Globe on 06/10/98.

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26 May 2000 09:52 (EST)
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