Shelly Berg is due to give birth in a few weeks to her second child. She will be the sister that Destiny wanted so badly. But Destiny will not be here to enjoy sharing her growing up with a sister. Destiny died in August, 2003, at age 4.

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,

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

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."

Posted on September 29, 2004

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