Meet our 2023 Ambassador: Charlie
Charlie’s Story
Every year COTS has a Youth Ambassador who helps us share the lived experience of the organ transplant process and its impact on the youth and their family. This year, it is our pleasure to introduce you to Charlie!
Charlie’s parents describe her as “the funniest, silliest, sassiest person they’ve ever met”. Multiple times, her mom Bekah referred to her as a source of endless joy. She is honest, expressive, and resilient. She had a difficult and complex medical journey as a young child; at 2 years old she experienced bone marrow failure and underwent a transplant. When she also experienced liver failure she went to Toronto to stay at Sick Kids. Originally they had assumed the family would only need to stay there for 3 months, and that 3 months turned into over a year.
COTS was immaterial to the process for Charlie. A similar organization – the David Foster Foundation – generally helps with funding for transportation, however they only fund solid organ transplants. The David Foster Foundation supported Charlie during the liver transplant process, but when she needed to go to Toronto for a bone marrow transplant, COTS helped the family with travel costs.
Charlie experienced erythropoietic protoporphyria (say that ten times fast). “It trashed her liver”, said Rebekah. This disease also causes sensitivity to sunlight, which results in pain and discomfort. Rebekah recalled a story of the medical staff ‘sun-proofing’ the surgery room; going above and beyond for Charlie’s comfort and well-being. The whole family bonded with the medical staff over the course of the year they stayed in Toronto.
Charlie’s Journey
Some facts about Charlie’s journey: firstly, her father was able to provide the donations for both the bone marrow and liver transplant! His match was incredibly fortunate, and allowed for Charlie to forego anti-rejection medication. The family speculates that Charlie may be the only transplant recipient in BC not to be using anti-rejection meds.
The family has seen how this process contributed to Charlie’s growth. She is honest and raw about her emotions, even when she can’t explain them in words. She is expressive and genuine, loving and trusting “to a fault”, says her mother.
Importantly, her family describes her as a normal kid. There are times where she drives her family crazy, but the bond and affection they have deepens knowing that Charlie could havedied.
Where is Charlie now?
She is in grade 1, and she is learning a lot! It goes without saying that it was a rocky year for the family but school is going well. Charlie is happy and loving to learn how to socialize. She is starting to make friends, goes to birthday parties, living life as an average kid. She is also into lots of extracurriculars; dance, video games, fairies and fairy tales, books in general, and loves going to the park (I mean, what child doesn’t?). She likes playing with bubbles, and fights with her younger sister. Rebekah could not stress enough how despite the transplant experience, Charlie is just like any other child in all the ways that matter.
When asked about the transplant experience, Bekah highlighted an important fact: transplant children are “walking miracles”. Most of the time, donors are deceased; someone lost a loved one for this person to be here. And yet, that loss gave someone else the opportunity to live their life. Transplant children are resilient because their bodies have been submitted to incredible difficulty and hardship. She points out that transplant children grow up to be caring and vulnerable, often doing fundraising, advocacy, going into healthcare themselves to improve the lives of others. That, says Bekah, is worth appreciating.