Children with life-threatening illnesses, like Penelope Neri, 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-expenses 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.”