March 20, 2019
Two-year-old Charlie has a close bond with her mom and dad.
That’s because she rarely spends a moment away from them.
Charlie has a rare genetic disease called erythropoietic protoporphyria (EPP). It means ultraviolet light gives her second-degree burns and damages her liver.
“We’d always switch spots so one of us could do something like grocery shop and the other could stay home with Charlie. We couldn’t go out as a family,” says her mom, Bekah, about the time before the family came to Ronald McDonald House Charities (RMHC) Toronto.
When Charlie’s liver started to fail in November 2018, the Locks came to Toronto from their home in Langley, B.C. for a liver transplant.
“It was hard to uproot our lives and move to a new city, so I was grateful when we came to the House. They really know how to support families here.”
Charlie had a life-saving liver transplant on Dec. 4, 2018 and Kelsey was the donor.
“Physically it was tough, but it was emotionally satisfying to see the immediate change it made on my daughter. She was our happy, alert baby girl again and I contributed to that,” says Kelsey.
“Kelsey is proud of his scar, he shows it to everyone,” jokes Bekah.
When Charlie recovered from the transplant, she joined her parents at the House for a short while to wait for the next step in her treatment plan.
“Being at RMHC Toronto is the most time we’ve spent together as a family. We love to hang out in our room and watch TV or play in her toy kitchen,” says Bekah.
Shortly after the transplant, Charlie returned to the hospital and on Feb. 22, 2019, Kelsey was also the donor for Charlie’s bone marrow transplant. Doctors hope the procedure will cure her sun disorder.
The Locks are expecting to be at RMHC Toronto for up to a year while Charlie continues her treatment.
“I didn’t think we would have to be here for so long, but I wouldn’t want to be anywhere else.”
Bekah and Kelsey agree that one of the best parts of staying at RMHC Toronto is connecting with other families. They’ve become close friends with another family whose daughter was born four days after Charlie.
“Our families love to make dinner and play board games together,” says Bekah.
Despite everything they’ve been through, the Lock family has a refreshing outlook on life.
“One blessing from this experience is that Charlie has spent a lot of time with both of her parents. She is so close with her dad, they’ll crack jokes together. It makes me happy,” says Bekah.
On April 3, the family will be celebrating Charlie’s third birthday. Even though they still have a long journey ahead, the Lock family is grateful they can celebrate special milestones together at RMHC Toronto.