As much as having a child born with cystic fibrosis is heart wrenching, the parents of a Penticton girl with the disease said its also made their family closer.
“It’s something that never leaves your mind,” said Dean Robinson, whose three-and-a-half-year-old daughter, Ruby Lou, has the fatal genetic disorder that affects both children and young adults.
There is no cure.
Robinson said he and his wife, Debbie, have spent hours travelling to Vancouver Children’s Hospital for Ruby Lou’s treatments. They administer medication to her every day.
“We’re alright with that but the time that it takes, it’s pretty heavy duty,” he said, noting treatments and regular trips to Vancouver will continue for the rest of her life. “It’s a progressive disease, so it gets worse and the medications increase.”
On Sept. 6, Ruby Blues Winery is hosting a Big To-Do for Ruby Lou, from 4 to 8 p.m. It features a a silent auction with more than 100 items donated by local individuals and businesses and a live auction.
The event is being held to raise funds for programs and research to help Ruby Lou and the 114 Canadian children that are diagnosed with CF each year.
Because CF is fatal, and its effects could worsen unexpectedly, the Robinson family treasures the days they spend together.
“What we do is live to the fullest we can, which is kind of a plus because you always talk about living in the moment but we’re forced,” he said. “We have no choice. We have to live in the moment. We enjoy her as much as possible. We don’t take days for granted. If we’re going to be with her, we’re not going to think about anything else, that kind of stuff.”
Robinson said issues that were once life’s bigger problems have become minor issues they no longer worry over.
As for his daughter, she doesn’t have any idea, the serious nature of her disease.
“She’s just full of life and she’s full of energy. She’s going all the time,” he said. “She’s good, she’s a very happy kid.”
Tickets are $45 and include a reception with Ruby Blues wines, hors d’oeuvres and dessert, with live music by The Van Horne Trio.
The auctioneer for the evening will be Stockwell Day and emcee Nikos Theodosakis.
Tickets are available from the winery and 45 Karat salon in Summerland. A shuttle service is being provided by Top Cat Wine Tours with pick-up points at the Summerland Arena and Penticton Lakeside Hotel and return service from the winery. Those wanting to take advantage of the service are asked to inquire at the point of ticket purchase.