By Joanne Taylor

After two years of cancellations due to COVID-19, Families Camp went ahead at Totara Springs in the sunny and warm Matamata from all over New Zealand. Twenty-One children and their caregiver/s gathered at a camp specifically designed for children living with arthritis. Families Camp provides a unique opportunity for children and their families to connect with others who understand the challenges of living with arthritis.

Families Camp is a new name for what was once called Childrens Camp and this time the Arthritis NZ Youth Advisory Group played a role in helping the organisation plan the camp and all of the activities.

Throughout the weekend, children took part in archery, rafting, shooting, swimming, kayaking, rock climbing, indoor activities, and water slides into the river. These activities and the youth leaders providing support, helped the children build endurance while having fun with their peers and showed them that if activities are paced appropriately with time for rest, they can take part in more than they thought.

While the children were having fun and making new friends, parents and caregivers attended educational sessions led by Rachel Callear, paediatric rheumatology physiotherapist and Dr Priscilla Campbell-Stokes, paediatric rheumatologist and paediatrician. Youth leader and previous camp attendee, now nearly 18 years old, India Heron, ran a mindfulness session and spent time with the adults sharing her experience as a child with arthritis and answering as many questions as she could. “I love talking to the parents. I enjoy drawing on my lived experience to help them navigate how they can support their child with arthritis.”

India and the other youth leaders, Jasmine White, Tom Flashoff, Jacob Atwood, Matt Hutton and Gabby Shepherd, held a Q&A panel session in which they answered all of the questions that parents and caregivers had to throw at them. The diagnosis has a significant impact on the parents and caregivers too and we don’t often talk about the mental and emotional toll it takes on the parent or caregiver, as one Mum explained: “Every parent expects a happy and healthy child, and then they get arthritis, which is very difficult to accept – emotionally. The parent understands the gravity of it from the beginning and they have to help their child deal with life with arthritis and the impact it has on their little bodies, their school life, friends, sports, families and everything in between.”

Being diagnosed with a form of arthritis, usually Juvenile Idiopathic Arthritis (JIA), is life-changing, however, each of the youth leaders said that if they could go back in time and take arthritis away they wouldn’t. “Arthritis and the journey I’ve had has made me who I am today and I am proud of that,” said India.

“I’ve been so grateful to come to camp because it’s felt really lonely and really hard. It’s been great to be around families who understand, and the team leaders have been incredible in showing our kids that even through the hard stuff, they can be amazing,” – Mum.

Another Mum said that it was the best camp she has ever been to and having her daughter meet other children who have been in similar situations meant a lot.

“She has gained so much confidence and was able to leave me, which is a big thing for her. I can’t thank the team leaders and organisers enough for this opportunity.”

Arthritis NZ is proud to bring families together to create a sense of belonging and provide valuable resources to help children and their families manage their conditions.

“In the last five years since diagnosis, we’ve been dealing with COVID-19 and haven’t met anyone else that’s been on our journey. This camp was mind-blowing. I am so thankful, so grateful to meet other families and children, and without this camp, I don’t think we would feel so content with where we are in our life.” – Amanda, Mum.

“This camp has been amazing because it’s allowed Charlotte to make friends with children who understand her journey and it’s connected me with a community of parents that I didn’t even know existed. We’ve made friendships here that are probably going to last for the rest of our lives and it’s so amazing to have that community and that connection.” – Charlotte’s Mum.

“We’ve had the most amazing weekend meeting like-minded parents dealing with similar issues. My daughter has made friends that we will keep in touch with for the longest time. It’s been an incredible experience.” – Mum.  

It’s safe to say Families Camp was a success. It would not have been possible without the generosity of our donors, if you were one of the hundreds of donors who supported these families – thank you.

Proudly supported by Sutherland Self Help Trust and Constellation Communities Trust.