Like most four-year-olds, swinging between her grandparent’s hands was a game Jessica loved to play. But when it ended in dislocated elbows and a trip to the emergency room, it started a painful journey where popping joints and aching muscles became part of Jessica’s everyday life.
“I felt just awful; they looked accusingly at me like we were doing something harmful to her, but we had no idea,” remembers Sylvia, her loving Gran.
It wasn’t until years later when Jessica was nine years old, that a neighbour recognised Jessica’s unusual symptoms as being similar to those of her own children with Ehlers-Danlos Syndrome. Finally, the pieces began to fall into place. Jessica was referred to a children’s rheumatologist who immediately diagnosed her with both Hypermobility Syndrome and Ehlers-Danlos Syndrome.
“It was a relief to know why I was in pain all the time, finally. I would be told it was just growing pains or treated like I was making it up. I finally felt heard.”
The very same year, Jessica attended her first Camp Freedom, and seven years later, she hasn’t missed a single one.
Because all through WA, young people like Jessica, living with chronic bone and joint disease, are counting down the days to Camp Freedom this October. The problem is, at $2,177 per child, we urgently need your big-hearted generosity to help as many as possible attend.
Held over six days, Camp Freedom is the only chance young people, aged 5 to 17, get to spend time with other kids living with conditions just like theirs. For some, our onsite team of physios, counsellors, and registered nurses means it’s the first time they’ve ever had the medical support to sleep away from home. For others, it’s a place where they can push themselves beyond what they thought possible. To discover that despite their physical limitations, they can still push themselves to achieve their dreams – no matter how big!
It’s a place where young people can safely discuss medication side effects, pain management, and mental health with experienced professionals and each other. And for teens like Jessica, it’s a place to explore important topics such as alcohol and drugs, relationships, and even career inspiration – real-life stuff. Most of all, it’s a place for old friends and new friends who truly understand each other to connect because they know what it’s like to live in chronic pain every day too.
“We started up a group chat. It’s great because when you have a problem, you can just ask everyone, and they’ll tell you their experience. If you have an idea and they’ve already tried it, they’ll be like, ‘no, don’t do that!’ You get different ideas than you would from your rheumatologist because we’re the ones living it. Right now, all we’re talking about is Camp Freedom!”
Young people like Jessica rely on Camp Freedom. Will you please help to get them there with a big-hearted gift?
Jessica is 17 now. And while she has learned to manage her condition over the years, she still has days when getting out of bed feels impossible. But like so many young people with chronic bone and joint conditions, she takes her medication, digs deep, and adapts hour by hour, with grit and determination.
In her last year of high school, the ache in Jessica’s hands makes writing long essays difficult, but she learned to hold her pen a new way and it eased some of the pain. Some days, when her knees pop out of place as she climbs the stairs, she leaves extra time between classes and takes the lift instead. She straps her ankles to keep them strong and wears braces when they’re too painful. And while she admits she’d do anything to not feel so tired all the time, she doesn’t let it hold her back from the things she loves like swimming and water polo.
This will be Jessica’s last year as an attendee at Camp Freedom, but like so many before her, she looks forward to using all she’s learned to volunteer as a camp leader for years to come.
“I can’t wait to come back as a camp leader, I wouldn’t miss it! Honestly, if I couldn’t go, I’d probably just sit at home crying for the entire week!”
While Camp Freedom is almost free to attend, the costs are considerable. Those who should attend we subsidise, but our volunteers who generously give their time need feeding, transporting, and accommodation. Our onsite team of physios, camp leaders, and registered nurses need the same and require payment too. Adventure activities and other experiences run by professional operators fill young people with newfound confidence, but they’re expensive too. And while Lotterywest does provide us with some generous funding, we are still desperately short of what is needed to run the camp successfully.
As you can imagine, at a cost of $2,177 per child to attend, every dollar counts. An urgent, tax-deductible gift would be wonderful, but any amount would be so appreciated. Young people like Jessica already miss out on so much. Western Australia’s only camp for kids with bone and joint diseases shouldn’t be one of them!
Donate securely and easily!
We run Camp Freedom for the express purpose of helping kids with bone and joint disease and accept the costs our work entails. But if you have in your heart to help share these costs by giving a generous gift, we will be truly grateful.
Phone: Speak to our friendly team from Monday to Friday on 1800 011 041