The Letcher family are a large group who are frequent guests at Canuck Place. Parents, Jordan and Kerena have five boys including middle child, Heston who was diagnosed with Sanfilippo Syndrome when he was two. Today, he’s a six year-old boy who has never spoken a word, but lights up the faces of those who meet him.
“When Heston was diagnosed it felt like our world had collapsed,” said Kerena. “Everything had an element of sadness to it, and even great events would turn to painful ones as we realized that one day Heston would be missing from those moments.”
“Heston’s diagnosis has been described as a ‘parent’s worst nightmare’ and it is our reality. We are the parents that are grieving the loss of our hopes and dreams for our child, all while anticipating a much greater grief to come with his passing. Some day we will be the parents that look back on the time they had with a child that has passed. Until then we are creating all the memories we can.”
It can be hard to find activities to interest an entire family that includes teenagers and twin three year-olds, while still being accessible to Heston, which is why the Letcher family are frequent recreation therapy participants.
“Canuck Place has helped us to enjoy creating memories with Heston,” explains Kerena. “We have learned we can still live and have fun, be excited and enjoy time together in spite of his diagnosis.”
Canuck Place also enables the family to travel outside of their hometown of Victoria. Heston requires a special bed for sleeping, which most hotels don’t have on hand, but Canuck Place does. The family makes the most of their time in Vancouver, visiting places like Science World and the Vancouver Aquarium. They’re perfect for the endlessly curious Heston, who loves watching everything bright and colorful.
Some of the Letchers favourite Canuck Place memories come from visits with the Vancouver Canucks.
“These visits make a tremendous difference,” said Kerena. “It gives us something to be truly excited about, and an opportunity to feel important. You cannot underestimate the value of having something to look forward to, or to remember fondly to a family that is coping with the stresses of a terminal child.
Does it take away the burden of our child’s diagnosis? No, it doesn’t.
Does it help us have something to distract us from the heaviness of it? Absolutely.”
The family’s most recent Canuck visit was with Bo Horvat, who spent a special afternoon with them at Canuck Place. He hung out with Heston in the garden, and played floor hockey with the twins.
We created a special hockey card to remember the day, which you can download for yourself here.
You can help families like the Letchers continue to create amazing memories together. Donate today.