Children like Penelope Neri with life-threatening illnesses navigate choppy waters on a daily basis, including being prodded and poked and downing mouthfuls of nasty-tasting medicine all hours of the day and night. But that’s just the way it is.
So it’s extra special when an opportunity floats their way that allows them an unparalleled escape.
That’s the big, magical wish sailing 5-year-old Penelope’s way — an all-expense paid Disney cruise, courtesy of the folks at the Make-A-Wish Foundation.
Penelope and her parents, Caryn and Adam Neri of Green, her 2-year-old sister, Evie, and several other family members and friends were surprised Sunday by local Make-A-Wish granter Bunny Oldham at Red Robin restaurant in North Canton.
“I learned that this is Penelope’s favorite restaurant,” Oldham said as we waited for the family to arrive. “One of the reasons is that this is one of a few restaurants that has a vegan menu, and the family is vegan.”
In October, Penelope announced her wish: “To have a slumber party with the Disney princesses and go swimming with Ariel.”
When she learned on Sunday her wish was being granted and then some, she could hardly contain her glee.
Given all that she’s been through since birth and is still ahead, that kind of trembling inside is very much welcomed.
“My daughter was born with a rare disease which is life-threatening if not managed promptly and properly,” said Caryn Neri, a nurse in obstetrics and gynecology at Akron City Hospital who is soon to graduate with a master’s degree, establishing her as a nurse practitioner.
“Penelope’s disease — her adrenal gland doesn’t produce enough cortisol — affects almost all body systems, including her heart, bones and growth, and her endocrine system as well as urinary and reproductive systems,” her mother said.
The condition, known as adrenal insufficiency, occurs in one in 400,000 births.
“In short, Penelope does not produce the hormone that maintains life,” her mother said. “Without medication, Penelope would not maintain a normal heart rate, blood pressure, body temperature, blood sugar and so on. She would go into circulatory collapse, coma and death. This is just the short of Penelope’s disease. She has been through more than most adults: countless hospitalizations, reconstructive surgeries, constant blood draws to check her levels and specialist appointments.”
Off to the airport
When Make-A-Wish granter Oldham told Penelope that “a very big car” from Thomas Limousine would be arriving at her home to take her, her mom and dad and little sister to the airport so they can go on a five-day, four-night Disney Cruise, she squealed with delight while her eyeglasses nearly took flight off her nose.
Oldham said Penelope was nominated for the wish several months back but lots of details, such as getting passports, had to be worked out before the announcement could be made.
In presenting the itinerary for the cruise on the Disney Magic, Oldham rattled off a long list of things Penelope would be doing: personal visits from the Disney princesses, a deck party, a glass-bottom boat ride with pirates, a day on Disney’s Castaway Cay island, cooking classes with Mickey, snorkeling with the dolphins, a manicure/pedicure with Mom and so much more.
Mom, who volunteers with a number of nonprofits, said she wasn’t that familiar with Make-A-Wish until she heard other mothers with children with life-threatening illnesses talk about it.
“We are truly and deeply humbled by this amazing gift and we haven’t even left for the cruise yet,” Caryn Neri said. “And our wish granter, Bunny, is by far one of the best people I’ve had the pleasure of getting to know. She volunteers her time and has made this journey impressive and memorable for all of us.”
Grandma Helen McCoy could hardly contain her joy: “Penelope has to take medicine three times a day, one at 4:30 every morning. Yet she gets up like a real trouper because she knows she has to.”
Before leaving, Oldham — assisted by two of her daughters/future grant makers 11-year-old Lilly and 12-year-old Molly — presented Penelope and Evie with brand new Disney Princesses luggage: blue for Penelope with Elsa and Anna from the mega-hit Frozen on the front; and purple for Evie with new Princess Sofia the First on the front. Both were filled with everything Disney, from toys to jewelry to stickers.
“Make-A-Wish wants to spoil you and for you not to worry about a thing while you’re there,” Oldham said. “Everything is being taken care of including all of the gratuities. And if you want souvenirs, that’s handled too. … And when you get back, Build-A-Bear is planning a party for Penelope …
“How magical is that?”
Penelope, I predict, won’t have any trouble getting up at 4:30 in the morning to take her medicine. With all the excitement, she probably won’t be able to sleep.
But here’s wishing her sweet dreams anyway and a lifetime of singing at the top of her voice her new favorite song, Let It Go from Disney’s Frozen.
Wishes like Penelope’s are made possible through donations and various fundraisers. For more information on Make-A-Wish Ohio, Kentucky and Indiana (Northeast Ohio Region), write: MAW, 6060 Rockside Woods Blvd., Suite 315, Independence, OH 44131 or call 1-877-206-9474 (WISH).
Jewell Cardwell can be reached at 330-996-3567 or jcardwell @thebeaconjournal.com.