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Organization for ill kids celebrates their resiliency
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Organization for ill kids celebrates their resiliency

Valerie Fund creates book of photographs and inspiring stories

Some of the children featured in the book Voices of The Valerie Fund are bald; others look too wise for their years. They have all had or still have cancer or a blood disorder. But their faces are so bright with determination and courage, they invite smiles from the viewer.

That was the response sought by the three people responsible for the book.

“We wanted to have something that would encourage and inspire the people” coming to The Valerie Fund’s hospital-based outpatient centers, said fund cofounder Sue Goldstein. “It’s also a way to get out word about The Valerie Fund, and to show people the kids they’re helping. It’s also a reminder that all around you there are thousands of kids in this situation.”

She created the book with writer and volunteer Rhonda Silver and communications and special events director Bunny Flanders. Between its covers are stories of those assisted through the fund, which helped establish treatment sites that would make things easier for families with severely ill children.

Goldstein and her husband, Ed, who live in Warren, started the fund back in 1976 after they lost their younger daughter Valerie to cancer at the age of nine. Some 25 years later they lost older daughter Stacy to breast cancer at 37.

Through the six years of Valerie’s illness, they had driven back and forth to Manhattan for her treatments. In light of the strain that put on their family, their goal in establishing the Valerie Fund was to set up treatment sites closer to home and specially geared to children and their families.

The fund now has seven hospital-based medical outpatient centers in New Jersey, New York, and Philadelphia treating children with cancer and blood disorders. They are staffed with medical personnel, social workers, and child-life specialists. Each year the centers treat around 4,000 patients, with more than 25,000 patient visits annually.

An eighth center, at the Cancer Institute of New Jersey in New Brunswick, is called the LITE (Long-term, Information, Treatment effects and Evaluation) program and serves long-term survivors.

“These days, 79 percent of kids with pediatric cancer or leukemia get cured,” Goldstein said. “There is real cause for optimism that wasn’t there when Val got sick.”

The patients’ stories had been gathered before, to feature in programs given out at the fund’s annual galas. This time questionnaires were sent to patients and their parents — and sometimes their siblings — inviting them to describe their thoughts and feelings about the illness, or treatment, or life beyond treatment, in words or with artwork.

While contributors’ names are mentioned at the end, the pictures and quotes stand on their own, without explanation or identification.

Silver, who lives in Montclair, called the book “a testament to resiliency — to the idea that ‘if I could get through this, so can you.’”

The selecting and editing was done by Silver, a cancer survivor who does business writing for nonprofits, and Goldstein, who has a master’s degree in sociology. Goldstein also writes a blog at www.UnexpectedLives.com, and has written a book about her family’s experience with cancer.

The radiant, upbeat pictures were taken by a team of photographers who volunteer their time with Flashes of Hope. The organization takes high-quality pictures of sick children to help them “feel better about their changing appearance by celebrating it,” according to its website. Volunteers shoot a number of times a year at each TVF center, and provide their “models” with a portrait shot, a stack of smaller prints, and a CD that they can make copies from, all at no cost.

The message of Voices, despite the brevity and lack of exposition, is very clear: As Goldstein said, “There is no giving up on anybody.”

The book can be purchased online for a tax-deductible contribution to TVF. The hardcover version is $25, the softcover $10; go to  thevaleriefund.org/tvfStore.php.

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