Jaxton Tory’s short life has been trying, but Thursday morning saw a big helping of magic enter his family’s life.
Five-year-old Jaxton was diagnosed with a rare genetic disorder called Cri du Chat syndrome when he was just eight weeks old. Cri du Chat is a rare genetic disorder due to chromosome deletion of the fifth chromosome and is characterized by a high-pitched cry as an infant, similar to a cat’s cry.
Individuals with the disorder also have intellectual disability and delayed development, small head size, low birth weight and distinct facial features. It affects an estimated one in 50,000 live births.
Shortly after Jaxton’s diagnosis it became clear that major changes would be coming to the Tory family. One of the parents had to be with Jaxton at all times and also manage his many doctor’s appointments. Visits with friends and family became more infrequent as all of the work needed to care of Jaxton was a lot to handle for the family.
Even today, Jaxton requires a feeding tube for all nutrition, hydration and medication. He also needs mobility equipment like his wheelchair and walker, and will need other major surgeries in the future. His health is an ongoing battle, and will continue to be for the rest of his life.
But for one morning most of that stress vanished when the Tory family made their way to Fraserway RV in Abbotsford.
After making the trek from their Ladner home, the Tory’s got their first chance to see Jaxton’s wish come true in the form of the trailer. Jaxton and his younger brother Camden also got the chance to meet Marshall and Chase from his favourite show Paw Patrol, who were on hand to present the trailer to the family.
“I’m very overwhelmed,” said Jaxton’s mother Michelle Tory. “This is way more than what we ever expected when we were granted our wish. The folks at Fraserway RV have gone above and beyond and I’m humbled by the whole experience.”
Also included with the trailer were a number of camping accessories, bedding and a custom Paw Patrol design.
“I’m just in shock with everything. We might move in here,” Michelle joked.
Darryl Way, the sales manager at Fraserway RV, said this is the third time he has worked with the Children’s Wish Foundation of Canada. Fraserway does one of these wish grants every year.
“I love it,” he said, of the wish program. “Nothing makes me happier than this.”
Way said that giving back is a big part of Fraserway RV.
“Fraserway is a huge part of the community within Abbotsford and Fraser Valley and our owner is very big on giving back. We try to surround ourselves with like-minded people that do the same thing.”
Way said the company works with local food banks and many other charities both locally, nationally and internationally.
Black Press publisher Carly Ferguson said it was a memorable morning.
“Black Press Media was pleased to partner with the Children’s Wish Foundation and Fraserway RV to make Jaxton’s wish come true,” she said. “To meet Jaxton and many members of his family, to see two brothers play with their new toys outside their new trailer and witness the family’s excitement and tears of thanks, won’t be forgotten by any of us.”
For Laura Ullock, the manager of resource development with the Children’s Wish Foundation of Canada, it’s always a special moment to see the wishes granted.
“It’s so heartwarming to see the community, Black Press and Fraserwa RV come together and support this family,” she said.
Ullock said the Tory family initially found out about her organization through a rare disease conference, but they were having difficulty finding a suitable trailer.
“They needed something that was big enough for all of Jaxton’s equipment and have room for him to grow as he gets older,” she said. “So we reached out to our friends at Black Press – who have a great connection with Fraserway RV and they helped us find this and both groups helped pay for this. We don’t receive government funding and rely entirely on donations from the community. We wouldn’t have been able to make this possible without them.”
She said the trailer will provide the Tory family with many new opportunities and so much joy.
“His health has been an ongoing issue and will continue to be so for them to be away from the doctor’s office and be out in the wilderness making memories will help build the family back up in a positive way,” she said. “It will create happiness and give them something to look forward to after they’ve been through so much.”
Michelle agreed, and said this is a life changing event for her family.
“Jaxton loves the outdoors, travelling and going on adventures and this is a good way for him to stay connected to his cousins in Alberta,” she said. “I absolutely recommend Children’s Wish to other families out there, it was very easy and today makes it all worth it.”
For more information on the Children’s Wish Foundation of Canada, visit childrenswish.ca.