Ryan White’s wish was simple: he wanted to go fishing with his uncle, who lives in Port Edward.
In the seven-day trip from the Children’s Wish Foundation, White and his family have gotten to do much more, as Prince Rupert businesses pitched in to show the best of what the North Coast has to offer.
“It’s definitely been a blessing for all of us, him being accepted for a Wish,” his mother Amie DeVorkin said. “Even though we go to Vancouver all the time, he just gets poked and prodded. He has a complex life, and it’s getting harder on him the older he gets. His quality of life is very poor.”
White, now 13 years old, has been a patient of the BC Children’s Hospital since he was two and a half. He has dysautonomia with a rare adrenal problem, which means he gets tired easily and his body can’t regulate his temperature well. He also has eosinophilic esophagitis, so he’s usually fed formula through a tube. There are only a handful of foods he can eat orally. Although they’re still waiting for the autism assessment results, White’s doctors have determined he’s on the spectrum. They’re still figuring him out.
“The hardest thing he has is with the eating thing. With the eosinophilic esophagitis, everything is based around food. Birthday parties, holidays, Christmas, trick-or-treating,” DeVorkin said. “He loves food. It’s like everyone, you want what you can’t have.”
That’s where the fishing comes in.
Fishing is an activity White can participate in without getting tired, and fish is one of the few foods he can eat. The small family, DeVorkin, White and his 11-year-old sister Kyah, live in Prince George, so DeVorkin’s brother, Warren, keeps in touch by sending photos from his home in Port Edward. His updates are mostly about fishing.
“He wanted to go fishing with Uncle Warren, to catch those fish Uncle Warren has caught. That was his wish,” his mother said.
He doesn’t like talking to strangers, which includes a newspaper reporter, so White nods as his mom talks about their favourite parts of the trip. They started with three nights at the Crest Hotel that helped set up a fishing excursion with Sunset Charters, as well as a seaplane tour with Ocean Pacific Air — exploring by land, air and sea.
On a whale watching trip arranged by BC Ferries, they saw whales for the first time. They were headed back to shore when the captain noticed a rare sight: bubble-net feeding humpback whales.
Skeena Kayaking donated the use of a double kayak for the whole week, and the adults were treated to a tour of the Wheelhouse Brewery. For four nights, Kinnikinnick RV Park provided a cabin near where Warren and his partner, Moe Berrigan, live in Port Edward. In the past week, they’ve spent plenty of time smoking the fish they catch, and White has been eating his fill.
“Even though Prince George is only eight hours away, we never get to see them,” Berrigan said.
They’ve been enjoying the time together, the normally defiant White full of smiles. It’s their first family vacation.
“I’m a single mom of two kids and I work a full-time job just to pay for my bills, and I miss lots of work taking Ryan down to Children’s and everything,” DeVorkin said.
“With the Wish trip, Ryan could have picked anywhere. He picked here, and I’m so glad he did.”