Twelve-year-old Rotorua girl, India Heron, is looking forward to “feeling normal” at a children’s camp designed especially for kids like her at the end of February.
India has arthritis. It makes her joints sore and stiff and stops her doing her favourite things, like swimming and pottery.
At the camp, run by Arthritis New Zealand, she’ll be able to try all sorts of physical activities in a safe environment, enjoy some fun, and make friends with others who understand what it’s like to have arthritis.
“India wants to try new things – even abseiling, although she’s terrified of heights!” says her mother Belinda, who’s also looking forward to going to camp.
The family has had a full-on year learning to cope with India’s diagnosis almost exactly 12 months ago.
It all began with a swollen knee. At first, it didn’t appear to be serious but before long India’s right knee was twice its normal size and she was limping in pain.
Medical tests ruled out a sprain or a tumour. After the fluid was drained, India had steroid injections to manage the inflammation. A couple of months later the diagnosis was confirmed as JIA, or juvenile idiopathic arthritis, the most common form of arthritis in children. JIA causes the body’s immune system to attack healthy cells, causing painful, stiff and swollen joints.
Both India’s knees were soon affected, then her ankles, hips, wrists, elbows, fingers and toes. She developed chronic pain syndrome so walking became difficult and the swimming lessons had to stop. Her stiff hands caused her to lose confidence in her favourite craft activity – pottery.
What really knocked her though was the feeling that she was letting the rest of the family down –dad Fraser, twin sister Alicia and younger brother Lachlan. She could no longer join them in outdoor activities.
“India was a healthy child before this so 2017 was a full-on year,” says Belinda. “At times she’s felt low and fragile and there have been lots of questions for all of us, especially because we wondered whether India’s identical twin would be affected too. So far, she hasn’t been.
“We’ve tried to educate ourselves as much as possible so we have a better understanding of India’s condition, and juggle caring for her with supporting the other children. Things we used to take for granted have to be done differently now, for example, playing family board games at the table instead of on the floor.” …
India has responded well to arthritis and pain medication. She also has physiotherapy and regular visits to Starship Hospital to monitor her condition.
“We’ve been really lucky, and the level of care and support we’ve received has been amazing,” her mother says.
Belinda values the support available from Arthritis New Zealand through events like the camp. For parents and caregivers it’s an opportunity to talk to others who face the same challenges, and learn from health professionals who will be on hand to answer questions.
“We’ve discovered a family friend who also has arthritis is going to be there as a volunteer youth leader, which is really great.
“I’m looking forward to meeting other mums and people who can be a positive influence for India. I want her to have fun and feel normal because everyone there understands what she’s going through.
“It’s exciting to be able to have a break away with others who are living with arthritis. Camp is a place for us both to learn more.”
The camp takes place on 23 to 25 February at Totara Springs, Matamata.
Arthritis New Zealand aims to improve the life of every person affected by arthritis. We are a national not-for-profit organisation focused on raising awareness, advocating for those with arthritis and providing advice and support. For more information, phone the helpline 0800 663 463, find us on Facebook or visit www.arthritis.org.nz