Dealing a winning hand to ailing kids

Ninth Annual SCATV Charity Poker Run comes to the aid of two county kids in greatest need

By RICHARD A. ROSS

ELDRED, NY — Many an expectant parent has uttered a prayer, “Lord, just let my child be born healthy.” In the United States, that prayer is answered more times than not. Of the more than four million babies born here annually, most enter the world intact and relatively healthy.

But not all of them.

Some require rapid intervention to deal with abnormalities that arise at birth, while other seemingly healthy children become gravely ill later on.

In either scenario, the costs are unspeakably high, not just in financial terms, but emotionally as well, for the afflicted kids and the families who love and support them.

Each year, the Sullivan County ATV Charity Poker Run is staged as a benefit for two area children in great need. This year’s event, which will be held on September 22 (see “Run in the ninth” on page 38), will aid eight-year-old Candace Chantel Battiste of Smallwood, NY, born with Giant Congenital Nevus; and 10-year-old Elizabeth Victoria Grese of Liberty, NY, who suddenly found herself unable to walk a year ago.

Candace’s story: Beauty is more than skin deep

When Candace was born on June 18, 1999 after an uneventful pregnancy, her appearance was a grievous shock to her 17-year-old single mother, Rachel, and to the medical personnel at Flushing Hospital. Wrapped around the infant’s face and neck was a hairy black skin that would later be identified as Giant Congenital Nevus, a serious skin disorder that arises in one in out of every 200,000 births.

Unprepared for the daunting care that Candace would require, Rachel wanted to put Candace up for adoption or foster care, but her own parents Miriam (Mimi) and Charles Jacobs stepped in to assume temporary custody.

Now eight years and nine surgeries later, the Jacobs are still acting in that capacity. Mimi gave up her job with the postal service to devote herself full time to Candace’s care. Charles, a letter carrier, retired two years ago. Yet even with his health insurance, costs have surged beyond $15,000 a year out of pocket, leading to credit card debt.

To learn about the peculiar malady, the couple attended a convention held by Nevus.org in Denver, CO.

Research led them to Children’s Medical Hospital in Chicago, where surgeon Bruce Bauer began the first of nine surgeries to date to remove portions of Candace’s potentially cancerous blackened skin. Grafted implants were used, a product of saline implantations that caused healthy skin tissue to stretch. Subsequent surgeries were performed on disfigurements of the eye, nose and mouth, caused by earlier surgeries.

Candace had to endure the painful stares, the name-calling and the stigma of having such a disfigurement. That was enough to make her grandparents decide to move from the city to Sullivan County. But it was in the post office in Monticello one day that they heard a child say, “Look at that monkey girl.”

While intolerance, insensitivity and ignorance are not geographically bound, neither are the capacity for compassion and understanding. Duggan School principal Patti Sonnenschein welcomed Candace to kindergarten after preparing the school’s staff and kids for her arrival. Three years later, the bright and otherwise typical eight-year old dances, jumps rope and learns while Mimi, “A nana on a mission,” raises money from two books she has written about Candace and tolerance, titled “Embracing Candace; Anthology One” and “My Name is Not Monkey Girl.” Visit www.valsonwritings.com/candalysepublishing.aspx for more on her writings.

Hopefully, through those efforts and others, such as the Poker Run, a planned surgery for June 2008 will come to pass.

Elizabeth’s Story: To dance, run and be free again

Elizabeth Grese fully understands her condition as she reckons with chemotherapy, radiation and the implanted double-lumen broviac in her chest, through which she receives her medicine. From August 2006, when she was suddenly unable to walk, though the frightening diagnosis of Ewing Sarcoma/PNET and the subsequent six-hour back surgery to remove a tumor from her spine at the Maria Ferari Children’s Hospital in Vallhalla, Elizabeth’s parents, John and Evelyn, have been frank and upfront with their remarkable daughter, who loves to swim, enjoy the outdoors and dance.

Needless to say, many of Liz’s favorite activities have been adversely affected by her illness. Though she missed going to school last year, she was tutored at home by Liberty elementary teacher Maureen Jensen. Jensen also offered the family a place they could stay after their landlord had raised their rent by $400 dollars, stating his fears that bills from their daughter’s illness would make them incapable of paying the rent. The landlord refused to allow them to go month to month while they looked to find a new place to live.

In June, Liz attended Liberty Elementary School’s moving-up ceremony and was the recipient of a perseverance award. It was a fitting tribute to a young woman who is determined to be free of her illness and is battling it with all she’s got.

Liz draws strength from her grandmother Carol Kennelty’s successful battle against breast cancer. Now, ironically, Jensen has been diagnosed with cancer too. “We’re all connected,” notes John.

John is a stage technician whiz who used to work for Matrix Productions, a subsidiary of Bristol Myers Squib, doing lighting, sound and video. Evelyn is a paralegal for the Greenwald Law firm in Goshen. Living on a modest income, the parents were hit hard by Liz’s diagnosis, and the costs of her care and transportation have put the family under great duress.

Liz is attending Liberty Middle School this year but will miss much time as she continues her three-week cycles of chemotherapy and other treatment. Currently, she seems to be doing well, but a PET scan, an MRI and a bone scan will determine the current presence or lack of cancer cells and give a clearer picture of how the battle is progressing. The tests are slated for sometime between Thanksgiving and Christmas.

With the proceeds from the event, Liz and family will have much to be thankful for, and good news from the upcoming tests could signal the family’s receipt of their most cherished Christmas gift, their daughter’s progress on her road to recovery. Their greatest hope is that Liz will someday surpass the five year and one day mark that would signal her finally being free of any cancer.