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Before a rare cancer
claimed her, the child experienced pain, paralysis and
blindness. Shelly and Joseph Berg could only stand by and wait
after the doctors told them there was nothing more they could
do.
"She knew she was
dying. She never used the word, but she knew her body was
failing," Shelly said. "Near the end, she said to me, 'Mommy,
I'm not going to get better, am I?' I told her then that she was
going to go to Heaven.
"She said she would
miss me, but otherwise it pleased her. She said when she got
there she would be able to run and play again -- and be able to
see again."
Shelly is positive
that Destiny is now happy doing just that. But she said there
are other children,
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and families,
experiencing what the Bergs experienced. And, in her own and in
Destiny's name, she is pleased that there soon will be a
resource not to end what has to be a parent's worst nightmare,
but to make enduring it a bit easier.
Exceptional Care for
Children, a nonprofit corporation, recently completed purchase
of a building in a park-like setting near Newark and plans soon
after the turn of the year to open there a 20-bed
skilled-nursing-care facility for chronically and terminally ill
children.
Jeannine Winsness,
founder and president, said the facility is intended to fill a
long-neglected component in serving that clientele. "I've seen a
lot of children die in undignified fashion," she said.
Winsness, a
pediatric nurse practitioner, came to Delaware from Wayne, Pa.,
to bring to fruition the goal toward which she has been working
for more than six years. Because of what she described as layers
of bureaucratic barriers, she said she was convinced that
"Pennsylvania [health and other officials] didn't have an
interest in having the project there. Delaware is entirely
different. Most of the officials and other people I've met with
here have been very supportive," she said.
The concept behind
Exceptional Care is simple and straightforward -- to provide a
"compassionate alternative" to an institutional setting in which
the young victims and those |
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Shelly and
Destiny Berg. The photograph is an enlargement of
one that Shelly took when Destiny was 2. That is
when the illness which proved fatal was diagnosed. |
them have been
required to spend final days or, in cases of chronic illness,
endless days.
Surprisingly enough,
however, the idea hasn't caught on on this side of the Atlantic.
Winsness said the Delaware facility is modeled on as many as 30
in England. To the best of her knowledge, the only other one in
the United States is in California.
Everything about the
place, she said, will be as homelike as possible. The property
includes such amenities as a woods, pond and walking path. The
rooms will be decorated and furnished in a style that does not
suggest a hospital or nursing home. Some will even have gas-fed
fireplaces.
That said, there
also will be incorporated into that setting state-of-the-art
medical equipment. Ventilators, feeding tubes and central
intravenous feeding lines will be blended in as unobtrusively as
possible.
There will be no
attempt to disguise the purpose of the facility, she said. It
will, for instance, eschew an euphemistic name and go by
'Exceptional Care for Children'.
Winsness stressed
that the facility is intended to build upon, not replace,
existing treatment facilities. The most prominent in this area,
the Alfred I. du Pont Hospital for Children, is fully
supportive, she said. Ed Woomer, administrative director of the
hospital's patient and family services department, said that, at
any given time, Du Pont Hospital "has several children waiting
for placement in a more appropriate facility."
Winsness said that,
when fully operative, Exceptional Care will have a staff of
between 65 and 70 people. It will serve patients up to the age
of 19 with infants and toddlers on one floor and school-age
children and adolescents on another. Each child will have his or
her own room and there will be live-in quarters for parents
available.
Insurance and
Medicaid are expected to cover most of the operating costs. The
corporation is now in the midst of a capital campaign to finance
acquisition of the property, which has until now housed the Head
Injury Recovery Center, remodeling and equipping the facility
and start-up costs. Winsness described the venture as a $6
million project.
Shelly Berg said
that she will be part of the a volunteer support staff, serving
as a mentor. During her own ordeal, she relied heavily on the
support of the congregation of East Point Community Church. "My
pastor (Tom Ward) was always there for us," she said.
Before Destiny's
illness and between her death and the later stages of her
current pregnancy, Berg served as a pre-school teacher. The
27-year-old Brandywine High School graduate said "a certain
balance" is required to be open to well children after
experiencing a desperately ill child. "It's two different
worlds. Their challenges might not be as extreme as Destiny's
were, but they have real issues," she said.
In a sense, she
explained, her daughter provided the impetus for her wanting to
share with other parents during their ordeals. "I used to be shy
and quiet. But the whole time she was sick and in pain, Destiny
never complained -- not once. I feel if she could be that brave
when she was so young, I can go out and do what I can to help."
she said.
While Exceptional
Care necessarily is predicated on acceptance of a harsh reality,
it will in no way be there simply as a place to which to go and
die.
"When doctors say
there is nothing more they can do, it simply is not always
true," Winsness said. "You always have hope, right up to the
end. Sometimes that hope shifts from cure to comfort, but there
is always something we can do." |
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