When local couple Christy and Bryn Fell learned their infant son Shea had a rare genetic condition called epidermolysis bullosa, that made his skin blister with the slightest amount of friction, they knew it was only a matter of time before they would have to say goodbye to their precious son.
Shea was born Dec. 9, 2013 and died July 12, 2014.
During the most difficult time in any parent's life, the couple was directed to Canuck Place, the children's hospice in Vancouver, to help with Shea's extra special care.
"Canuck Place allowed us to focus completely on loving Shea and saying goodbye to him," said Christy, during an email interview.
"We were able to hold/cuddle him 24/7 for the last three weeks we had him with us."
Canuck Place has launched a fundraising campaign called Light a Life which features the Fell family. The campaign is seeking to raise funds to support Canuck Place as they care for more than 670 children with life-threatening illnesses and their families from across the province. Canuck Place offers medical respite care, pain and symptom management, recreational therapy, music therapy, art and education, as well as bereavement counselling on a continual basis.
Canuck Place staff allowed Christy and Bryn to focus all their attention on Shea. They didn't need to worry about meals or even doing their laundry. All their energy was focused on Shea.
"The nurses and the Canuck Place team also extended that care to our family that was there a lot of the time to support us," said Christy. "My mom and dad had a room upstairs so that they could support us and also my mom continued to help us with Shea."
At one point, the Fells had 11 family members at Canuck Place during the days and they were all supported by Canuck Place staff as well.
"There is counseling and spiritual care available for anyone who needs/wants it," said Christy.
Because of the time they had at Canuck Place, their memories of a most difficult time are treasured.
"We made beautiful memories with our beautiful Shea and gave him an abundance of love," said Christy. "We wanted him to never be alone and we were able to be with him on a steady basis. We are so thankful that we were able to do that."
At the end of his life, Shea was surrounded with love by his mother and father and grandmother, Christy's mother.
With the support of Canuck Place staff, Shea felt more love and joy than his family could hope for, said Christy.
"We were in awe of how many people fell in love with him," she added. "There are so many Canuck Place individuals that now feel like family."
After Shea passed away, the Canuck Place spiritual care leader ordained the funeral in Prince George.
"They also sent a nurse too - they had to have a draw to see who came because many of the nurses wanted to be there for us and Shea," said Christy. "Canuck Place is still involved in our lives as they offer many grief services for families. We receive regular check-ins, which we love."
Christy offers some advice to those going through similar circumstances that her family has experienced.
"Everyone's journey with a sick child is different," said Christy.
"Children are amazing and they will surprise you daily. It is important to take it day by day and be easy on yourself and each other. Invite this amazing team to be part of your family. They will make your journey through your child's illness as well as your grief journey not easier but with more support and love than you can imagine."
Christy and Bryn have now made Shea an angel brother, said Christy.
"We welcomed a beautiful healthy baby girl, Callie, born on March 3 of this year," said Christy.
"Callie is nine months old now and is as loving and curious as her brother. We recently celebrated what would be Shea's third birthday and Callie loves our birthday traditions of cupcakes and messages sent to heaven via lanterns. At home we have a family picture wall and Callie loves to look at the photos of our family. She knows where to look when you say Shea."
The family is doing well and believes it's important to live each day with kindness and joy to honour Shea's memory, as that is what they want his legacy to be.
"Shea gave us so many gifts which we will pass on to Callie," said Christy. "We will teach her about kindness, love, finding joy in the little things and celebrating big."
Before Shea was born, Bryn was hoping to enter the medical program at UNBC but put the plan on hold to spend as much time with his family as possible.
During the Fell family's time at Canuck Place, Bryn was able to work alongside the medical team at Canuck Place and BC Children's Hospital, added Christy.
"He gained understanding and experiences that drove him to continue to apply to medical school a month after we lost Shea," said Christy. "We believe our little angel is a big reason that Bryn is now completing his second year of the northern medical program and is doing well. Another legacy our little man leaves us with."
Bryn is hopeful that he can return to Canuck Place this summer and do an internship with the medical team.
Donations by Dec. 31 will be matched dollar for dollar by John and Claire Nicola & Friends. John is a long-time Canuck Place supporter, past board chair and currently a director, who has gathered family and other philanthropists to support the donation campaign up to $200,000 for a matching total of $400,000.
To support Canuck Place and the pediatric palliative care they provide donate by visiting
www.canuckplace.org.
