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Green girl’s wish coming true thanks to foundation

3/20/2014 - South Side Leader
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By Maria Lindsay

Green resident Penelope Neri (shown with her mother, Caryn Neri) will receive a five-day Disney cruise to visit Jamaica, the Bahamas and Disney’s private island Castaway Cay with her family, thanks to the Make-A-Wish® Foundation.
Photo courtesy of the Neri family
GREEN — Just like in a Disney movie, wishes are coming true for a 5-year-old girl from Green.

Thanks to the Make-A-Wish® Foundation, Penelope Neri will meet all her favorite princesses and other Disney characters aboard a five-day Disney cruise during spring break as she and her mother, Caryn; father, Adam, who is a computer engineer; and 2-year-old sister, Evie, visit Jamaica, the Bahamas and Disney’s private island Castaway Cay.

Caryn Neri, who is a nurse in obstetrics and gynecology at Akron City Hospital and is set to graduate as a nurse practitioner in May, said the family will be flown to Cape Canaveral, Fla., where they will board the cruise ship.

Make-A-Wish grants the wish of a child diagnosed with a life-threatening medical condition, according to its website. The organization threw a surprise party March 15 at the Red Robin in Canton, one of Penelope’s favorite restaurants, to present her with the wish, according to Caryn Neri.

Her mother said Penelope was born with a rare adrenal defect in which her body does not produce cortisol.

“She was blue, had low scores and a low temperature, and spent two weeks in the Neonatal Intensive Care Unit at Children’s Hospital before they found a diagnosis,” she said.

Neri explained that Penelope’s body shuts down and has to be hospitalized in periods of stress, when she gets dehydrated, during an illness or even if she gets a small injury. The condition can be fatal without intervention, but Penelope is on medication, which has to be carefully monitored, as the disease can affect her heart, immune system and growth. Penelope also has to undergo tests every six weeks to adjust her medication, and she has to have an annual bone scan, which is intimidating for the 5-year-old, said Neri.

By age 2, Penelope had learned to swallow a pill, which is a more stable form of the medication than the liquid form, according to Neri. She said that milestone was a small celebration for the family.

“Penelope is dealing with this well, and she takes it all as a matter of fact,” said Neri.

The family submitted an application to Make-A-Wish in April to help them fulfill her daughter’s interest in Disney princesses.

“She loves the Disney princesses,” she said. “Penelope always talks about meeting them, having a slumber party with them, and especially swimming with Ariel, the Little Mermaid. A cruise is about the closest to being in the water with Ariel.”

Neri said they went to Florida last March for a family wedding and had hoped to take her to Disney World, but Penelope got sick and had to be hospitalized, and she missed the opportunity to meet her favorite characters.

The family learned in August that Penelope’s wish to meet the princesses had been granted after a visit from the organization’s representatives.

Neri added that Penelope, who knew something was coming but did not know what, “had an amazing time” at the surprise party where she was told about the trip, and her daughter was “in shock and just thrilled about it all.”

“Penelope couldn’t believe it was all happening to her,” said Caryn Neri. “We have been so humbled by this experience. You hear stories about this sort of thing, but you rarely get to see it up close. They are paying for everything — they pick us up in a limo to take us to the airport; they pay for the flight and the cruise; they give us money to buy souvenirs; and they even insisted on paying for the passports for the girls.

“Its hard to sit back and let them take care of us,” she added. “It’s just so awesome that there is an organization that does things like this for children. It’s so sweet.”

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