For baby Destin and his family, RMHC Toronto gave them what they needed most: a place where they could stay together in their most challenging time.
When Brian and Meghan welcomed their baby boy, Destin, in November 2021, they had no idea their perfect newborn son carried a life-threatening disease.
“They do a newborn screening to test for diseases that don’t show symptoms until later, and they tell you, we’ll contact you about screening results,” explains Brian. “Never in your life do you think they will actually contact you.”
Destin, the couple’s second son, tested positive for MPS1H, a genetic disorder also called Hurler syndrome. Carriers of MPS have a one-in-four chance of passing it on to their child, but before Destin’s diagnosis, neither Meghan nor Brian had ever heard of it. They had no idea they were both carriers.
Destin immediately started 10 weeks of enzyme replacement therapy at McMaster Children’s Hospital while a team at SickKids Hospital began looking for a match for a bone marrow donor—the standard of care for early treatment. Although Destin’s big brother, Wallace, was a match, he was also a carrier of MPS and so could not be a donor.
When a donor was found about eight weeks later, Meghan and Destin relocated to Toronto from their home in Hamilton, Ont., so that Destin could begin chemotherapy treatment before his transplant. Brian drove back and forth between Toronto and Hamilton every day, while Wallace stayed back home in daycare.
After Destin’s successful transplant, Meghan and Brian were told he would need to stay close to the hospital for 100 days for monitoring. They were grateful to find a place at RMHC Toronto, which allowed them to stay together, just steps away from the hospital and Destin’s care team.
“Being at the House was amazing. If anything went wrong, you knew you were two seconds away from the hospital. It helped a lot with the anxiety we were feeling about Destin’s health. Before we got the room at RMHC Toronto, the hardest part was just not being together as a family, and all the time I was wasting travelling back and forth.”Brian
While at the House, four-year-old Wallace was able to make happy memories, taking part in our Child Life and PAWS therapy dog programs, but RMHC Toronto Summer Camp was his favourite. Wallace loved spending time every day doing fun activities with his new friends, who were going through a similar experience with their families.
Thanks to early screening, Destin is more likely to have a positive outcome.. Children with MPS usually start showing symptoms between the ages of two and four, when it’s too late for vital early intervention. Destin will have to deal with the disease throughout his life, but his early diagnosis will help provide a better quality of life.
“Ontario is currently the only province that screens for MPS,” says Meghan, “and Destin is only the second kid in Canada to be diagnosed through newborn screening since it was added to the panel in July 2020. If Wally had the same condition, we wouldn’t have known until he started showing symptoms as it wasn’t on the screening panel when he was born.”
Today, the family is back at home in Hamilton settling back into normal life. Destin has completed his enzyme therapy and made a full recovery from his bone marrow transplant.
“We call him our little superhero,” says Meghan, “because of what he has already lived through. Any time we complain about anything, we go, ‘If Des can go through what he’s gone through, we can get through this.’”
To support families like Destin’s staying at RMHC Toronto, please donate here.