Date: Fri 21-Jul-1995

Publication: Bee

Author: KAAREN

Quick Words:

a5-Fiorillo-illness-funds

Full Text:

Family Battles A Child's Illness Without Insurance w/photo

B Y K AAREN V ALENTA

Christopher Fiorilla looks like the typical two-year-old: cute, bright-eyed,

with a winsome smile that steals your heart.

But his uncertain gait, and the seizures he began suffering last April, have

clouded his future. His parents, Denise and Todd Fiorilla of Parmalee Hill

Road, are anxiously awaiting the results of tests done at Yale-New Haven

Hospital. Doctors there have warned the Fiorillas that Christopher may have

one of several serious brain diseases which could result in death or mental

retardation.

"The tests had to be sent to (labs in) Baltimore and Boston and the results

won't be known for four to six weeks. That's what is so frustrating. Nothing

can be done until they find out what it is," Denise said. "Some days he is

weak and is constantly falling down. Some days he does well. Then I deny his

illness and think may be he's getting better. But the doctors say that's not

the way it happens."

The seizures which began in late April culiminated during the night of July 2

when Christopher was taken by the Newtown Volunteer Ambulance to Danbury

Hospital then sent by LifeStar helicopter to Yale-New Haven Hospital. Tragedy

struck the Fiorilla family twice that night when Christopher's grandmother,

Mildred M. Fiorilla, 69, had a fatal heart attack while a passenger in a car

following the ambulance to the hospital.

"It has been so hard on Todd," Denise said. "In the same week he lost his

mother and learned that his son may have a fatal brain disease. I don't know

how he manages to be so strong."

The first indication that something might be wrong with Christopher occurred

when he suffered a seizure that lasted a half an hour on April 29. He was

transported by Newtown Ambulance to Danbury Hospital where he was admitted for

observation. At that time the doctors thought he might have an infection

because he had a fever, but he showed no signs or symptoms of anything more

serious.

"Over the next six weeks he slowly started to lose his balance and had trouble

walking," Denise said. "It happened so gradually that we weren't aware what

was happening. But when we went to a party where there were a lot of other

young children to compare Christopher to, we realized that something

definitely was wrong."

At that point the Fiorilla's pediatrician recommended that they take

Christopher to a neurologist.

"Christopher wasn't walking right," Denise said. "The neurologist scheduled an

MRI (magnetic resonance imaging test) for a few weeks later but within days

Christopher was getting noticeably weaker so I insisted that the test be moved

up. At that point the biggest fear was that he had a brain tumor."

The test showed no brain tumor but the outlook still was grim.

"The neurologist said Christopher had a very rare condition, a disease

involving the white matter in the brain. He named four or five diseases that

it might be but he wouldn't give me a definition of them or tell me what the

outcome would be or if Christopher was in pain. My sister and I had to go to

the library to look up the diseases in reference books."

A Grim Night

A few days later, on Saturday night, July 1, Christopher developed a low-grade

fever.

"Todd gave him a cool bath and some Tylenol and Christopher seemed to be okay

when we put him to bed," Denise said. "About 2 am I woke up because I heard

our dogs barking. I got up to quiet them and I discovered that Christopher was

having a seizure. I yelled for Todd to call 911."

The Fiorillas also were concerned because Todd's mother lived in an apartment

upstairs in their house.

"We thought we should wake her up because if she heard the ambulance and got

up after we left it would terrify her," Denise said. "Meanwhile, the ambulance

crew couldn't locate our driveway. Everything seemed to be taking so long. We

were all downstairs waiting when I heard my mother-in-law's phone upstairs

ringing and I realized it was the ambulance personnel trying to find our

house. "

By this time Christopher's seizures had stopped so, after calling the 911

dispatch center again, Denise ran up the driveway to wait at the top to flag

down the ambulance. Todd's mother ran upstairs to get dressed.

"She wanted to drive her car and follow the ambulance but Todd said he would

drive her while I rode in the ambulance," Denise said. "We were still on

Parmalee Hill Road when Todd drove up close behind the ambulance and was

sounding the car horn."

"Todd's mother had gone into cardiac arrest, so a second ambulance was sent

and had to come from Stony Hill," Denise said. "Meanwhile, Christopher's fever

had started to go up again so we had to cool him down. It was a nightmare for

Todd who was torn between being with his mother and his son."

Christopher was admitted to Danbury Hospital, held overnight and was within

minutes of being released the next day when he began to have another seizure.

"I don't know how long the seizure the night before had lasted but this time I

was holding him and it was still going on after an hour," Denise said. "He

stopped breathing momentarily several times. Meanwhile more and more doctors

were being called in. They talked about sending him by ambulance to New Haven

but the Special Olympics were going on and the traffic would be a nightmare.

So they inserted a breathing tube into Christopher's throat and sent for the

LifeStar helicopter."

Christopher was flown to the pediatric intensive care unit at Yale-New Haven

Hospital.

"He wasn't conscious for several days," Denise said. "They thought he had a

viral throat infection, they tested him for meningitis, they did a CAT scan

and had the MRI results sent from Danbury. They also drew a lot of blood to

send out for testing."

Eventually Christopher was moved out of intensive care but he remained in the

hospital for several more days because of problems that developed because of

the breathing tube. He was released on July 10, four days after his

grandmother's funeral, with instructions that the Fiorillas watch for changes

in his condition. Christopher is scheduled to begin physical therapy this

week.

A Difficult Period

For his mother, the hardest thing now is the waiting.

"He knows that he used to be able to get up and go, to run around," she said.

"It's so frustrating for him that he cries. But at the moment there's not much

else (besides physical therapy) that the doctors can do because they don't

know what is wrong. The treatment will depend on what the tests reveal. For

example, the tests in the hospital showed that Christopher also has an

enlarged liver, but the doctors don't know why yet."

Compounding the family's problems, they have no medical insurance. "The

company that Todd works for is very small and some of the employees didn't

want to participate, so there was no group insurance," Denise said. "I worked

part-time after Christopher was born and we were just getting to the point

where we thought we might be able to get insurance when Christopher had his

first seizure."

The LifeStar helicopter ride was nearly $5,000, Denise said, and the first day

of his nine-day stay at Yale-New Haven was more than $8,000.

"We are still paying off bills from Christopher's first hospitalization in

April," Denise said. "We intend to pay these bills no matter how long it

takes."

Last weekend many of the Fiorilla's friends gathered at the home Rob and

Justine O'Grady on Great Ring Road to launch a fund-raising drive to help pay

Christopher's medical bills. The group is in the process of setting up a

special fund for donations.

"I was overwhelmed by the list of people who are helping with this," Denise

said. "It is wonderful to know that so many people care."