11-year-old Airdronian Braeden Lousier like many boys his age, loves cars. In fact, he is somewhat of a car connoisseur as one of his favourite cars is none other than the Lamborghini. However, Braeden is also one of only 100 individuals across the globe that has Hajdu-Cheney Syndrome.

His mother, Lia Lousier explained that every major organ of her son's body has been impacted by the chronic disease.

"A part of what comes with this is a lot of other sub diagnoses - including Crohn's disease. He's had strokes, he's had seizures, he's had two major heart surgeries. He has chronic lung disease, which means his lungs actually have quite a bit of scar tissue in them from having many repeated pneumonia," she said.

There are approximately 20 different specialists and doctors that monitor his health, which his mother said can turn on a dime. 

"He's literally fine one hour and the next hour it could be that he's breathing heavy and we need to actually go to emergency because he needs oxygen or things like that."

One of the other medical complications of Braeden's condition is that he experiences bone reabsorption, meaning that his body is reabsorbing his bones which in turn releases the minerals into the bloodstream.

"He's losing his hearing and the bones in his neck and his C2 vertebrae- the second vertebrae down in his neck are also reabsorbing and it's sitting at a precarious angle," she said. "There's nothing we can do in Canada for it right now; there's no surgery."

Lousier, a single mother of three boys said that because of her son's complex medical needs family vacations are not easy, considering they have to be planned around making sure she is able to get to a hospital quickly if something were to go wrong.

"One of the hardest parts of Braeden's journey is that we've never been able to plan too far ahead of time. We never know when we will next be in hospital,” Lousier said.

So when the family was chosen by the Starlight Children’s Foundation Canada, an organization that facilitates both in-hospital and out-of-hospital trips for children and families of children who have medically complex conditions, for a camping trip, Lousier said it was a dream come true for Braeden.

In late May, the foundation partnered with Pinnacle Lifestyles Resorts to host 29 seriously ill children and their families from Starlight Children’s Foundation Canada for a weekend of adventure at six of Canada’s top outdoor recreation destinations. The family travelled to the Edson area in Alberta, where they were able to experience camping as they'd never experienced it before.

"When you have kids with special needs, first of all, it's really expensive to try to travel anywhere. It's difficult trying to find something that would suit everybody's needs at the same time," she said. “Pinnacle offered us space (for comfort and any needed medical equipment) and the fun of camping! We were within a short distance of a major hospital (which is always key), and yet with nature."

Although Braeden is on the autistic spectrum, his mother knew right away that Braeden was in seventh heaven when the family reached the campgrounds.

"The first thing when we got there - he saw the ATV and the golf cart and said, 'I want those!'," Lousier recalled. "He's obsessed with how cars work and what they do. While he didn't actually drive the golf cart, he helped me steer. For him, that's just golden. It might seem so simple - going around a campsite in a golf cart, but to someone like Braeden, that's crossing off something on his bucket list."

Lousier reflected that when so much of one's life and schedule is spent in a hospital, spending time outside - while to some maybe mundane, for families like hers - it's cherished time.

"With Braeden, we always have it in the back of our minds that we don't know if we have tomorrow. Everybody in the world doesn't know if they have tomorrow but with Braeden, we just try to live In the moment," Lousier said.

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