Get behind Camp Twinkletoes 2018!
Camp Twinkletoes gives the families of children aged one to eight years with juvenile arthritis a fun and educational experience to help them ease their child’s condition.
Juvenile idiopathic arthritis (JIA) refers to arthritis diagnosed in children under the age of 16 and can cause severe joint damage and permanent disability. Children with JIA face painful flare-ups which affect their enjoyment of play and sport, and often have difficulty simply getting dressed and using cutlery. The persistent pain can interrupt their sleep, leading to lack of focus and mood swings.
We run the camp each year to offer parents and carers the latest information presented by rheumatologists, nurses and physiotherapists who work with JIA patients every day. And while mums and dads listen to the speakers, the Arthritis NSW team entertains the children and siblings with games, craft and other fun activities.
Dinners and bush walks give everyone a chance to get to know each other, share stories and feel part of a caring and motivated family community. Many families return each year to Camp Twinkletoes to spend time with others who understand the challenges of JIA and make new friends for themselves and their children.
Arthritis & Osteoporosis NSW has been running Camp Twinkletoes for more than a decade and, with the incidence of JIA increasing to one in 800 Australian children, we need your support to continue offering this worthwhile event.
How you can support Camp Twinkletoes
$20 will help buy books and materials
$50 will help a specialist speaker attend
$100 will help a family of four attend
Family experiences of Camp Twinkletoes
Two families, the Manefields and the Sammons, keep coming back to Camp Twinkletoes. Their stories, which we have shared below, explain why they find the experience so valuable and why we have made it the focus of our Christmas Appeal 2017 so we can offer it to more families in 2018.
Carter Manefield is almost seven years old and has a common type of JIA, oligoarthritis, in both knees and his wrist. One day when he was four, his parents watched him climb out of a swimming pool and noticed that one knee was the size of a large grapefruit. ‘Within three weeks his movement and gait had completely changed and he was very uncomfortable,’ said Carter’s mother Beth.
These days, Beth is proud of the way Carter overcomes his condition by adapting his play to his abilities. ‘If he’s having a bad day and his friends are running a race, he’ll become the coach or time keeper. At karate class if his wrist is hurting he’ll try a one-handed push up.’
The Manefields have attended Camp Twinkletoes for the past two years and Beth is amazed with the support it offers her family. ‘Firstly, Carter realised that he wasn’t alone in having arthritis. He makes new friends at the camp and doesn’t have to hide his condition or feel worried about it. Camp Twinkletoes also shows him what he can learn from his condition such as inclusion, empathy and self-care.
‘Secondly, it’s great to meet other parents who get it so I don’t have to explain everything. When we attended early this year, I loved that I could encourage the new parents and give them advice. The speakers are top notch and I always feel so uplifted and equipped after Camp Twinkletoes. It’s great fun for the whole family, the arthritis crew just make it so special for all of us,’ she said.
Nine-year-old Keelie Sammons was diagnosed with arthritis when she was 21 months old. It began with a limp and swollen right knee, followed a week later by a swollen hand and wrist. After multiple tests, doctors diagnosed Polyarticular arthritis, the second most common type of JIA. ‘We were also told that she was genetically predisposed to her eyes being at risk of JIA,’ Keelie’s mother Crystal said.
Keelie is determined to never let her condition hold her back. At school she often has to sit on a chair while everyone sits on the floor. ‘If I fall over when playing sports, I just keep going even when it hurts, because I like playing with my friends and I don’t want to let my team mates down,’ she said.
The Sammons family attended their first Camp Twinkletoes in 2011. ‘I remember realising at that first camp that we weren’t the only family going through this and that Keelie was not the only child dealing with arthritis. It was such a relief to have others to talk to,’ Crystal said.
Keelie likes Camp Twinkletoes because she make new friends there. ‘I get to make friends who I can understand as well. Everyone is always really nice and we always get to do lots of fun stuff,’ she said. Her younger siblings attend the camps with Keelie and her parents. ‘The camp was good for Keelie’s younger brother too because he realised that Keelie’s condition is real and that she is not the only one with it,’ Crystal said.