M’town Girl and Family Battle Leukemia

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By John Burton
MIDDLETOWN – When her nearly 3-year-old daughter was diagnosed with leukemia two years ago, Andrea Verdone Gorsegner knew she had a mission.
Actually two missions: The first was to get little Natalie Grace well and offer the family’s full support. Second, Gorsegner said, was to work to help not only Natalie but for other pediatric cancer patients and their families.
Natalie was diagnosed with high-risk acute lymphoblastic leukemia on Aug. 16, 2012, just before her third birthday. “It changed everything” for parents Dan and Andrea, sister Hannah and, of course, Natalie, Gorsegner said.
The diagnosis meant Natalie would undergo aggressive chemotherapy treatments that would be lengthy and debilitating, having to go for her “pinchee,” as she described the intravenous injection, her mother said. It also would mean changes for the family.
Gorsegner wound up leaving her job in publishing to care for Natalie and the family relocated to the township’s Lincroft section, selling their North Jersey home – a move the family had been considering anyway, Gorsegner said.

Andrea Verdone Gorsegner having a happy, playful moment with her 5-year-old daughter, Natalie Grace, who will shortly be undergoing another round of chemotherapy in her battle with leukemia.
Andrea Verdone Gorsegner having a happy, playful moment with her 5-year-old daughter, Natalie Grace, who will shortly be undergoing another round of chemotherapy in her battle with leukemia.

But for the family, especially for Natalie, it became a learning experience with Gorsegner noting that she “learned more about cancer than you would believe” – and a chance to connect with other families, forming friendships and offering an opportunity to help.
Gorsegner was shocked to find out how little money gets earmarked for children’s cancer research, especially by pharmaceutical companies.
“There isn’t enough money in it,” she alleged.
Also shocking to her were the treatment therapies, which have doctors relying on medications and protocols, initially intended for adults, and simply reduce the dosage for children. And this is for childhood cancer “the No. 1 killer by disease of kids,” she said.
Meeting other families going through the experience and bonding with them made Gorsegner realize: “This isn’t just some sad story. We have to step up and help.”
Since then, she and Natalie have appeared on TV, most recently on the “Today” show in recognition of September being National Childhood Cancer Awareness Month, and have had stories about them appear in numerous publications, including November’s edition of Parent magazine.
Along with raising public awareness, Gorsegner sees this as a chance to raise money to assist in research. She established the Will You Send Us a Dollar website (www.willyousendusadollar.com). The website collected about $110,000 in its initial effort. “Every single, solitary penny” collected has gone to research, she said. The money was given to Arms Open Wide Childhood Cancer Foundation/The Truth 365, a Marlboro-based not-for-profit that administered the money.
The money was used to fund six drug trials, Gorsegner said.
Gorsegner has started a Facebook Page, Infinite Love for Natalie Grace, as another way of fundraising, educating and supporting young cancer patients and their families.
Her goal, she said, is to raise $150,000 a year for research for a different form of childhood cancer each year.
Hannah Gorsegner, Natalie’s 7-year-old sister, has lent her support, first donating the contents of her piggy bank and, more recently, cutting her long red hair.
Hannah’s head was shaved on the floor of the New York Stock Exchange on Oct. 22. She did it because, “I want to inspire kids with cancer,” she said. “I didn’t want them to stand alone.”
Hannah, her mother said, donated her long red hair to Wigs for Kids, which will be used for children undergoing cancer treatment.
Joining in the fundraising effort is Grace Sepe, owner of the Salon La De Da, Middletown, who was conducting a fundraiser at her hair, nail and makeup salon on Oct. 29. The event was scheduled to have a magic show and other attractions, including an appearance by actor Berto Colons, who has a reoccurring role on “Orange is The New Black,” and by Natalie. Sepe was asking for a $5 donation with proceeds going to Arms Open Wide.
“No child or parent should have to go through that,” she said.
Things are looking good for Natalie, Gorsegner said. Her prognosis appears to be very positive. She will finish her chemotherapy in November – no more “pinchees.” She has started school, pre-K at Mountain Hill School, Middletown, where she goes half-days and has been making friends.
“When I pick her up” from school, Gorsegner said, “she’s so happy. I know she’s having a great time.”