Born on June 1, 2016, Jake has already faced a lifetime of medical challenges. You see, Jake has a very rare genetic syndrome. In fact, there are only 80 to 100 people in the world who have ever been diagnosed with it. He also has Pierre Robin Sequence, which causes breathing and feeding difficulties.
The Christie family knew about Jake’s medical conditions prior to birth and so the family was able to come down to Calgary to prepare for a complicated and intricate birth.
“I always knew of Ronald McDonald House,” says his mom, Jamie, “but now that we’ve stayed here, it’s hard to describe how much it has helped us along in our journey.” “There is so much support, so much kindness here,” she adds. “We will be forever grateful and can’t wait to give back.”
The House gives the Christies a chance to take breaks in between the many hours they spend at Jake’s side in Alberta Children’s Hospital. The House also helps keep costs down and prevents her from feeling isolated. Jamie adds that it would get very lonely sitting in a hotel room by herself.
“It’s literally a home away from home,” she says of the House. A place to cook meals and have warm meals prepared by generous volunteer groups. Finding the time to cook and get groceries while caring for a sick child is very hard, she explains.
The Christies say they are fortunate their daughters, ages four and six, were able to stay with them over the summer months. The House’s fun-filled Summer Program ensured they had a positive experience while their parents were dealing with Jake’s medical complications. Being in a kid-friendly environment also helped make sure their girls didn’t feel “forgotten,” Jamie explains. “Here, they can still be kids.”
While the family isn’t sure how long Jake will be in hospital or how long they will need to stay at RMH, they know they are in the right place. In fact, the researcher and geneticist who discovered Jake’s syndrome are based here in Calgary!
“Some days are long and dark and you feel like you’re taking it all on yourself,” Jamie says. “But with the other families at the House, you know you’re not the only one with a sick child going through something like this.”