Going on a family camping trip is something that some people may take for granted. But for Airdronian Braeden Lousier’s family, it means the world.
Starlight Canada is a foundation that helps children suffering from serious illness create lasting memories through several programs. Pinnacle Life Resorts has partnered with the Starlight Canada Foundation to provide 29 children and their families a weekend of fun by camping out in nature. Braeden’s family had the opportunity to spend a few nights at Pinnacle Life Resorts' campground in Edson, Alta.
Eleven-year-old Braeden was born with Hajdu-Cheney syndrome, an extremely rare genetic disorder that impacts just 100 people world-wide. He was diagnosed at the age of seven and falls onto the more extreme side of the spectrum with this syndrome.
The National Institute of Health defines Hajdu-Cheney Syndrome as “a rare inherited connective tissue disease characterized by acroosteolysis of hands and feet, developmental defects of bones, teeth and joints causing distinctive craniofacial and skull changes, and also manifested by severe osteoporosis and short stature.”
Due to his condition, Braeden’s family has been unable to plan things too far into the future. His mother Lia Lousier said they take every chance they have to share experiences, like camping at the resort, as a family. She added these moments impact their life significantly.
“Having opportunities like that just become a huge part of our life,” she said. “It is something that we can do and so we seize every opportunity that we can.”
Because of his condition, Braeden hasn’t had the same opportunities to recreate as other children his age. Lousier said the recent camping experience provided her son an opportunity to connect with peers on a different level.
With a love of being in nature, Braeden was excited for the opportunity to go camping. Lousier said when they first arrived, the golf cart and ATVs instantly caught her son’s attention.
“He was like ‘I want that,’ before we'd even unpacked anything,” she said with a laugh.
Lousier highlighted the important work Starlight does for her family and others in similar situations. She is thankful the organization provided her family with the opportunity to create new and lasting memories.
She said that Starlight offers families a new look on life, providing a brighter outlook while in tough situations.
“Bringing families together and making you feel like there's a beacon of light out there that you can grab onto and do something fun for my kids that we wouldn't otherwise be able to do,” she said.
Since his diagnosis four years ago, Braeden has spent much of his life in and out of hospitals, making it difficult for the family to make plans as they need to virtually always be in close proximity to a hospital.
Living with cystic kidneys, having two heart surgeries, a major bowel surgery, and other health complications, Braeden’s family is focused on taking things one day at a time.
“You have a choice,” Lousier said. “You can live [in] panic mode, or you just kind of live in the moment. We try as hard as we can to live in the moment and live each day.”
Lousier highlighted Braeden’s positive spirit and said he leaves a lasting impact on everyone he meets.
“He's a ball of light and a ball of energy,” she said. “I don't think he's ever come across a person who hasn't fallen in love with him.”
