At Canuck Place Children’s Hospice, parents are courageous, resilient, and fierce. Kerena and Jordan Letcher are no exception. When their son, Heston was diagnosed as a toddler with Sanfilippo syndrome—a rare, terminal metabolic disorder, their world changed forever. As a parents of five, Kerena and Jordan were suddenly navigating a reality they never imagined.
“Being Heston’s mom is truly a privilege,” Kerena says. “It’s a daily reminder of what truly matters. What once seemed important becomes frivolous, and life takes on a new depth. I have often felt that before I had Heston, I lived my life in black and white, and now it’s in colour.”
There is no handbook for parenting, and all parents sometimes feel like they are finding their way in the dark. For the Letchers, being Heston’s parents often felt like stepping into a role that they were unprepared for. His needs were constantly changing, and Kerena and Jordan had to continually adjust, all while focusing on giving him the best quality of life possible.
“Our journey was full of uncertainty for many years,” Kerena says. “That was one of the heaviest burdens we carried. The only constant was that there was always something new to wonder about.”
In this constant state of uncertainty, Canuck Place was an invaluable support for the Letcher family. Access to the 24-Hour Clinical Care Line and virtual counselling meant they could speak to nurses, doctors, and counsellors who not only understood Sanfilippo syndrome, but who knew Heston’s complex care needs and the entire Letcher family.
The Letcher’s also accessed medical respite at Canuck Place—a much-needed break from 24-hour care. Heston’s condition made it almost impossible to travel, so staying at Canuck Place was the primary source of a holiday for the family. During medical respite stays, Canuck Place provided access to comfortable family rooms, healthy meals, activities like going to Vancouver Canucks games, and the chance to restore their energy while Heston was cared for by the expert nursing and physician team for pain and symptom management he required.
Canuck Place was also a source of fun for Heston’s siblings. “I knew that Canuck Place was a special place for our boys, but it was solidified when we were planning to go over for Heston’s final stay. All the boys wanted to come,” Kerena shares.
When the Letchers came to Canuck Place for Heston’s end-of-life care, the team supported the whole family and with compassion and sensitivity through unimaginable circumstances.
“It felt like were preparing for battle,” Kerena reflects. “And Canuck Place was there to equip us, catch us when we fell and showed us how to find strength even after the battle was over,” says Kerena.
Three years after Heston died, the Letchers are still connected to Canuck Place through counselling and bereavement groups, finding this time helpful to tend to their grief.
“There was always a cloud of fear that hung over me, knowing that Heston would die,” Jordan shares. “I really appreciated my sessions with Canuck Place counsellors. My thoughts and questions weren’t something to be solved, but rather I was someone to be heard and supported.”
For the Letchers, this has meant learning how to hold both love and loss at the same time.
“I have learned to not always avoid sorrow, to not always see it as negative,” Kerena explains. “There is meaning and comfort found in sorrow. When we allow ourselves to rest in it, not fear it, we can feel something at a deep level that gives new meaning to life.”
Families like the Letchers need a healing environment to ease suffering and a roadmap to navigate unthinkable circumstances. Because of generous donors like you, Canuck Place is there for the entire journey, from diagnosis, to care, and to tend to grief long after their child has passed. Learn more and donate to support essential pediatric palliative care at canuckplace.org.
