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Front Page Article in the Hartford Courant.


Born To Fight
March 29, 2002
By TRISH DAVIS, The Hartford Courant

WETHERSFIELD -- There are days when everything falls into
place for Racheal Morris.

When eating with a mouth that opens only as wide as a
half-dollar isn't so difficult. When blisters that form every month
inside her piercing blue eyes aren't so painful. When sores
spread over her body heal well.

Then come days such as one recent winter morning, when
Racheal, who has locked herself in the bathroom upstairs at her
Prospect Street home, wishes she could just slide under her dark
blue, starry-night comforter and get away from it all. The second
of a three-times-a-week, nearly four-hour-long bandaging routine
is to take place. Racheal, 18, needs the covering to protect her
skin, which is so fragile from a genetic disease that it bruises or
peels off with the slightest friction.

Racheal isn't up for the bandaging.

She has a cold, "which is like the flu for us," says her mother,
Laura Morris.

"She wants to get this treatment over and go back to bed," nurse
Cathy Melillo further explains as she prepares for the day's
treatment.

Melillo cuts gauze and lines the strips up and down Racheal's bed
like a rough checkerboard. She flicks on a small white heater next
to the bed.

"She likes it toasty or nice and warm in here after she gets out of
the shower," says Melillo. The two have forged a connection
over the years, so Melillo isn't fazed by Racheal's resistance.

"Sometimes we talk," Melillo said. "Sometimes I will sit here and do
the bandages and we will not say two words."

* * *


Racheal's life struggle is distilled in sky blue words on a plaque in
her room:

God Made Me Special.

The words are a reminder of this teenager's fight from birth
against a disease eating at her body's shell; a disorder she says
will not strip away her spirit. Racheal is coping with
Epidermolysis Bullosa, or EB, a rare, inherited disorder that can
destroy the skin and mucous membranes in the gastrointestinal
and respiratory tracts. Wounds are treated like third-degree
burns.

There is no cure for EB. Racheal is among about 50,000 to
100,000 people nationwide affected by the disorder, which
doctors are still trying to define. Laura Morris and Brenda
Gionfriddo, whose 2-year-old son, Jonathan, has EB, are on a
quest to expand knowledge in the state with an awareness and
support group. At the same time, a national nonprofit organization
is pushing for a bill on Capitol Hill to get all insurance providers to
pay for wound care, including bandages and expensive creams
to dress wounds. The bill has been tabled for now.

In its severest form, EB causes crippling, scarring, blistering and
deformities such as webbed fingers and stunted growth. At 5
feet, 4 inches and 95 pounds, Racheal has many of those
symptoms. But she is insistent on living a normal a life - even if
the obstacles are never-ending.

"I think I feel discomfort half of the time, but if you don't have a
positive attitude about things, you are not going to enjoy life as
you should have or live it the way you want to," Racheal said. "I
have a lot of goals and I want to enjoy my life."

Her fight against EB began Nov. 21, 1983, at Pascack Valley
Hospital in New Jersey. Laura Morris was 19.

"From the second she was born, my life just changed," Morris
said.

Racheal was eventually diagnosed with one of the more severe
forms of the disease.

"She could scratch herself in the middle of the night and scratch
her skin right off," Morris said.

Hit with the cost of EB health care, Laura Morris ended up on
welfare.

"I had no health benefits," she said. "It really didn't bother me. I
knew this was going to be a long, progressive disease, so I
knew it was going to be expensive. I needed her to get the right
medical coverage."

She landed her first job, as a paralegal, two years later and
signed up for Social Security Disability income.

Depending on the severity of the disease, cost for care ranges
from ,000 to ,000 a year, said Jean Campbell, director of
the Dystrophic Epidermolysis Bullosa Research Association of
America in New York, a national group that raises funds for
research for a cure and services to people with the disease.

The Morris family pays about to a month on wound
care for Racheal.

"From insurance companies to insurance companies, the
coverage varies and our families are literally broke from paying
for bandages," Campbell said.

The medical community's ignorance of the disease, Morris and
others say, has been frustrating.

She recalled taking 6-month-old Racheal to an orthopedist in New
York. The doctor was about to demonstrate how Morris should
exercise Racheal's toes. Morris had warned him against pressing
down on the baby's skin.

"Wouldn't you know he pressed hard and she screamed like she
never had before," Morris said. "It was one of the worst things I
had even seen. Her whole foot from the heal to the flat side of
the foot was a complete blister."

At the Gionfriddo home in New Britain Thursday, 2-year-old
Jonathan was due for rebandaging. The toddler is afflicted by
intense itching. He had begun digging into his arms when
Gionfriddo cautioned him to stop and pulled him over to her.

Minutes later, Gionfriddo and nurse Janis Clegg began unraveling
bandages from Jonathan's feet, legs and arms - which were
covered with open sores. As soon as the bandages came off,
Jonathan reached in with his fingers. Aware that scratching
could cause more harm, Gionfriddo and Clegg tried to soothe
Jonathan's discomfort with medical creams.

"We haven't found anything that really works, because his itching
is so intense," said Clegg, a nurse with Interim Health Care. "The
creams just help to lubricate. ... The itching is such an intense
sensation that it's hard to control the pain."

Sometimes Barney and Rudolph videos consume Jonathan's
attention long enough for him to glide off. But then come times
when Gionfriddo has to pop the latest blister emerging on his little
body and Jonathan bursts into tears and squirms inside his
cushioned Winnie the Pooh chair. He calls out for "Mama" and his
blanky.

Gionfriddo and her husband, Dominic, try to stay in control.

"You kind of go into robot mode when you're doing it and then
think about it later," she said.

Gionfriddo decided to become a stay-at-home mom after
Jonathan was born. Dominic works as a state correction officer.
They have an older daughter, Ashley, who is not affected by the
disease.

The disease, both say, has not only been tough to handle, it has
also put a strain on their relationship.

"We haven't been out together in about three years," Dominic
said.

People with EB are born without the necessary collagen, or
"glue," in their connecting tissue, making the skin vulnerable to
friction. In some cases, blisters line internal organs such as the
esophagus.

"You know how it feels to have a blister on your feet?" Campbell
said. "Imagine having 75 to 100 on your entire body and have it
lanced every morning."

Some people with the worst form of the disease develop skin
cancers in their 20s and 30s that can lead to early death,
Campbell said.

A year ago, Morris and Gionfriddo launched a statewide support
group to serve as an open forum for families to share, support
and learn about the disease. The group of several families meets
every other month.

"When I was growing up, we didn't have any support group,"
said Cindy Fairbanks, a 38-year-old Manchester resident who
has a milder form of the disease.

Fairbanks learned about the support group upon her daughter's
fourth eye surgery. Her daughter, 10-year-old Suzanne, has the
same form of the disease.

"When I first got pregnant, I was a little nervous about it,"
Fairbanks said. "It didn't show up until the third child. ... Suzanne
was born missing five layers of her skin from her knees down.
She had worn it off inside of me."

* * *


The medical community has much to learn about EB.

"Usually dermatologists and pediatricians have heard of it, if not
seen many cases," said Dr. Jouni Uitto, chairman of the
dermatology department at Thomas Jefferson University in
Philadelphia. "But often, general practitioners are not aware of
this condition and are especially not up to date on the recent
developments."

But progress has been made, Uitto said.

"Ten years back, nobody had any idea what was causing this
condition. We now know there are 10 distinct genes that can be
faulty that can result in the fragility of skin," he said. "The clinical
implication is that we can much better classify ... and predict how
severe the disease is going to be down the road."

Over the years, Racheal has had several surgeries to separate
her fingers, which look like mittens. But each time, they fuse back
together. She visits the dermatologist twice a year for cancer
detection.

Today, Racheal is a freshman at St. Joseph College in West
Hartford.

She wants to transfer to the University of Hartford next fall to
pursue her interest in graphic arts. She is a serious student,
aware of how the world could perceive her.

"A lot of jobs can be discriminatory, [and] with me having a
physical disability that may be an issue one day, and I want
something to back me up in written confirmation that I can do it.
Because I can do it."

Racheal recently landed her first job doing administrative work
with Farmstead Telephone Group in East Hartford. And Laura
Morris and her husband, John, took out a second mortgage on
their home to buy her a car. The state paid the ,000 for
modifications to fit Racheal's needs behind the wheel.

"A lot of people question if you can do it," Racheal said. "Like
driving - there was no doubt in my mind that I would drive. It was
just a matter of how.

"Everybody's different and everybody looks different," she
continued. "Like your skin may be a different color and mine has
sores on it."

For more information about EB, log on to the state support
website at www.CtebSupportgroup.faithweb.com , or call Laura
Morris at 860-721-0848.






Webmaster:Brenda Gionfriddo