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Fund raiser to benefit Cape teen with rare disorder

October 13, 2012
By TIFFANY REPECKI (trepecki@breezenewspapers.com) , Cape Coral Daily Breeze

Organizers are in desperate need of donated items for an upcoming silent auction to help raise money for a Cape Coral teen's medical expenses.

On Oct. 21, the auction will be held from 1 to 4 p.m. at Chef J Bistro, at 2612 Santa Barbara Blvd., with the proceeds to benefit Samantha Pecoraro, 15. Appetizers at the event will be provided by owner Chef Jethro Joseph.

At age 10, Pecoraro was diagnosed with eosinophilic esophagitis, a rare disease that makes her allergic to most foods. In an effort to reduce her pain, she decided to stop eating in 2011 and now relies on a feeding tube.

Article Photos

Samantha Pecoraro, 15.

"Unfortunately, Sam's experiencing new symptoms in addition to the EoE (eosinophilic esophagitis)," Pecoraro's mother, Susan McArthur, said.

Her daughter has developed a sleep apnea and memory issues, and has constantly been sleeping, fatigued and achy - just "run down," McArthur said. The symptoms have been around for at least the last six months.

After speaking with a genetic specialist, it is believed that Pecoraro may have a mitochondrial disease, which deals with energy generated for cells. At the end of October, she travels to Atlanta, Ga., to undergo more testing.

"Sam kind of fits the classic symptoms," McArthur said, adding that this is not uncommon with EoE. "A lot of kids seem to be diagnosed with it."

Uncertain about how her family would cover the new medical expenses, Pecoraro said she went to school one day upset and distraught.

"I know it's going to be very pricey because she's a geneticist," she said, adding that the specialist is one among only four in the country.

A culinary arts student at Oasis High School, she was questioned by her teachers - Chef J and his assistant, Melanie Geiger - and she explained what was going on with her medical situation and the out-of-state tests.

"She seemed like she was kind of down," Geiger said of Pecoraro, adding that she and Chef J decided at that moment to put something together to help.

"We wanted to make it a comfortable event," she said, adding that the family will be present to talk to attendees and answer questions.

"It's an open forum and silent auction," Geiger said. "We want people to be able to come and talk about it (the disease) and learn about it."

With a beach resort getaway donated to the auction as of Friday, and a few verbal maybes on other items, organizers are desperately in need of more.

"We're still really open to getting more donations," Geiger said.

McArthur was shocked when she learned about the fund-raiser plans.

"I was just so shocked and surprised and overwhelmed by the generosity - that they want to do this for Sam," she said.

McArthur never imagined that she would need help from the community.

"I just never thought I'd find myself in this position before," she said. "But these medical expenses, I have a feeling, are something we're not ready for."

Pecoraro also expressed appreciation for her teachers' efforts.

"Nobody's really set a goal," she said, when asked how much they hope to raise. "I'll take anything I can get at this point. Any little bit helps."

Pecoraro also responded to picking the culinary arts path.

"To me, cooking makes me feel like a part of mealtime," she said

So far, white potato is the only food item she has found she can eat. She has shredded hash browns in the morning, then relies on her feeding tube and neocate, an amino based hypoallergenic formula, to suffice in the afternoon.

For dinner, Pecoraro has a baked potato.

"I feed (on neocate) overnight so I don't get malnourished," she said.

From an Italian family, Pecoraro admitted that giving up food was not easy.

"It was extremely hard, and I had those 'feel sorry for myself' moments," she said. "I knew I had to do what I had to do to feel better, for my health."

"It's 100 percent worth it," Pecoraro added.

Though her classes cover baking and frying, she enjoys sauteing. Pecoraro described cooking without being able to taste like cooking blind, and she relies on a heightened sense of smell and sight to build the dish she is working on.

"Being on a team is great also because I can have my teammates test it," she said.

Geiger called Pecoraro's sense of sight and smell "exquisite."

"It's amazing for someone who cannot consume food," she said. "She is definitely showing great passion, and her heart is totally into it."

Geiger admitted that she is sometimes in awe of Pecoraro.

McArthur echoed that. She explained that her daughter has been though a lot, that she has suffered all of her life - got sick whenever she ate.

"But she's been great," McArthur said. "I don't know how she does it."

To donate items for the auction, contact Geiger at (239) 896-3720.

People can also help by donating online at: www.gofundme.com/helpingsam.

 
 
 

 

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