Ryan White鈥檚 wish was simple: he wanted to go fishing with his uncle, who lives in Port Edward.
In the seven-day trip from the Children鈥檚 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.
鈥淚t鈥檚 definitely been a blessing for all of us, him being accepted for a Wish,鈥� his mother Amie DeVorkin said. 鈥淓ven though we go to Vancouver all the time, he just gets poked and prodded. He has a complex life, and it鈥檚 getting harder on him the older he gets. His quality of life is very poor.鈥�
White, now 13 years old, has been a patient of the BC Children鈥檚 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鈥檛 regulate his temperature well. He also has eosinophilic esophagitis, so he鈥檚 usually fed formula through a tube. There are only a handful of foods he can eat orally. Although they鈥檙e still waiting for the autism assessment results, White鈥檚 doctors have determined he鈥檚 on the spectrum. They鈥檙e still figuring him out.
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鈥淭he 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,鈥� DeVorkin said. 鈥淗e loves food. It鈥檚 like everyone, you want what you can鈥檛 have.鈥�
That鈥檚 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鈥檚 brother, Warren, keeps in touch by sending photos from his home in Port Edward. His updates are mostly about fishing.
鈥淗e wanted to go fishing with Uncle Warren, to catch those fish Uncle Warren has caught. That was his wish,鈥� his mother said.
He doesn鈥檛 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 鈥� 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鈥檝e spent plenty of time smoking the fish they catch, and White has been eating his fill.
鈥淓ven though Prince George is only eight hours away, we never get to see them,鈥� Berrigan said.
They鈥檝e been enjoying the time together, the normally defiant White full of smiles. It鈥檚 their first family vacation.
鈥淚鈥檓 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鈥檚 and everything,鈥� DeVorkin said.
鈥淲ith the Wish trip, Ryan could have picked anywhere. He picked here, and I鈥檓 so glad he did.鈥�
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keili.bartlett@thenorthernview.com
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