We first introduced you to Caleb Champagne and his family in April 2017, after Caleb spent the first 112 days of his life in the hospital. Caleb was born with Barth syndrome, a very rare genetic disorder that causes heart disease, muscle weakness and a suppressed immune system. RMH BC helped his family to stay by his side when it mattered most and find a community of support.
When the Champagne family returned home to Crofton, BC after six months at RMH BC, mom Jasmine remembers that it was a major adjustment. They were happy to see friends and family that they hadn’t seen in half a year, but they also had to get used to a whole new way of life.
“We were rushing around, trying to clean and organize our home for our new son who had tubes still attached to him, had suitcases of medical supplies and medications, and who was immune compomised,” she remembers. “Our older son Jordan who was only two at the time didn’t really remember our home and for days he cried to go back home – to RMH.”
Eventually they settled into a routine with Jordan entering preschool and Caleb and his mom keeping busy with physio groups, strong start programs and lots of trips to the pool. Together as a family, they love to be outside: walking to the beach, hiking, playing at the park, bike riding and camping.
A fighter since the day he was born, Caleb is now almost three years old and is learning to walk on his own and talk. His big brother Jordan, almost five, is looking forward to starting kindergarten in the fall.
At first, Caleb needed montly checkups in Vancouver, but now the Champagnes make the trip every 6 months. When they come for checkups, they usually stay for 2 to 3 days and see 5 to 7 different specialists, as Barth Syndrome affects his body in multiple ways. During these trips they welcome the chance to stay at RMH BC, both for the closeness to the hospital and for the fun activities for both boys.
Over the years, the families they have met at RMH BC continue to be an important source of support. “We made connections that will be with us for life,” says Jasmine. “The connections made were during the hardest time in many of our lives, we have walked similar paths and understand each other in a way some others might not. One of Jordan’s best friends is a friend he made while both their little brothers were in the hospital. Our RMH friends are like family; they helped us through some unimaginable moments, they took Jordan in as one of their own around the house, and they continue to be a part of our lives.”
Thanks to you, kids like Caleb and their families have a home away from home. Donate today and keep a family like the Champagnes close.