BROCKWAY — Six-year-old Jewel Whitehill and her family made countless special memories on their recent trip to Disney World in Orlando, Fla., where they could experience a magical trip thanks to the Make-A-Wish Foundation and the Brockway Area School District.
Jewell is the daughter of Chad and Brooke Whitehill of Brockway. The Whitehills have two other children, Jade, 8, and Easton, 3, who also went on the trip Nov. 8-14.
The Brockway Area School District, where Brooke is an elementary school teacher, funded the wish, according to Lindsey Herzing, regional manager of Make-A-Wish based in Punxsutawney.
“Brockway School District has been very supportive of the Make-A-Wish Light Up A Child’s Life Campaign over many years and will bring a donation to this year’s 25th annual campaign, Dec. 3-7,” said Herzing.
“At Brockway Elementary, we love supporting Make-a-Wish,” said Principal Candace Patricelli. “Some of our staff members, including myself, have family members who have been wish recipients. Our students and staff were so excited when we heard the money we raised for the cause was being used for our very own Whitehill family. We even had Jewel’s family recognized at one of our great assemblies. They are truly a very deserving family.”
Brooke said the family received a call from Make-A-Wish while they were with Jewel at Geisinger Medical Center in Danville.
“When we had called them back they had just said that somebody had reached out to them and they knew that her condition was very rare and that they wanted to be a part of granting her a wish,” said Brooke. “They said it’s for kids who have been through a lot and need something to look forward to.”
Make-A-Wish grants wishes to children with critical illnesses, who have reached the age of 2½ and are younger than 18 at the time of referral.
Jewel’s parents said they first noticed something wasn’t quite right with Jewel’s health a couple of years ago.
“She has had a presumed diagnosis. But her condition is so rare she’s not even officially diagnosed,” said Brooke. “They think that she has what’s called ROHHAD Syndrome. It’s super rare. There are like 56 cases ever reported so they don’t know a lot about it. She doesn’t have all the symptoms. She has some of the symptoms. So, it’s hard for them to say.”
“It is a rare, life-threatening syndrome that affects the autonomic nervous system (which controls involuntary actions like breathing and heartbeat) and the endocrine system,” according to a rare diseases website. One of the key features is dramatic weight gain over a six- to 12-month period in the first 10 years of life.
Jewel said she chose Disney World for her wish because she loves princesses and roller coasters — two things there are no shortages of at Disney World.
She said she loved riding Expedition Everest, a steel roller coaster at Disney’s Animal Kingdom.
“It’s horrible! It’s horrible,” said Jade about the experience of riding it. “You go backwards in the dark.”
The other highlight of the trip was that Jewel got to meet Princess Belle from Beauty and the Beast.
“Before we went, that was her goal, to meet Belle,” said Brooke. “And we ended up going in something that was called Belle’s Enchanted Castle.”
“When we went in there, Jewel got to dance with Belle,” said Chad. “They put on a play and she got to be the Beast. Part of that was to get to dance with Belle at the end of it. I have a video of it.”
The trip to Disney was nothing short of amazing, according to the family.
“I will say Give Kids The World Village was just unbelievable,” said Brooke. The Village is run with almost all volunteers. They make the trip so easy and treat families with such respect. The staff at the Disney parks and Universal Studios were amazing as well. If they could help the family in any way, they were more than accommodating.
“They really just thought of everything there,” said Brooke. “I don’t even know how to explain it. Just everybody was so nice and they had little surprises on the table for the kids, when they came home. And Jewel had a character tuck her in at night. And they just really went above and beyond to do special things.”
Jewel was also very excited to see Ariel from The Little Mermaid.
“We also got to go to Sea World one day and Jewel got to touch a dolphin, who was kissing her hand,” said Brooke.
If she could go all over again, Jewel said she would want to ride Everest Mountain again and see Ariel.
“She had her hands up on every roller coaster,” said Chad.
The family is very appreciative of the granted wish that was provided by Make-A-Wish. There are plans to talk on the radio for this week’s annual Light Up A Child’s Life campaign being held through Friday.
The campaign will run through Friday with live interviews each day from 7 a.m. to 4 p.m. with wish families and donors. Bids are taken on auction items all week long with the auction from 3-4 p.m. Friday. Donate by calling 814-372-1065 or stopping by our Sunny Studios on West Long Avenue in DuBois.