For educational purposes only.
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.
© Copyright 1998 Globe Newspaper Company
posted 26 May 2000 09:52
(EST)
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