At first, Carmen and her husband Gavin thought the crunchy noises in their son’s hands were nothing to worry about.
Then they noticed 10-year-old Wayde was having trouble tying his shoelaces. A keen rugby player, he started hanging back a little, struggling to catch the ball and reluctant to tackle. His upper body was losing its strength and his hands and fingers were often stiff and weak.
“At first we were told it was probably just growing pains. We’ve noticed something going on for the last two years,” Carmen said.
Wayde’s family lives in a small rural community, half an hour east of Pahiatua. Medical processes are slow and it was hard at first to get anyone to take Wayde’s condition seriously. When they finally got a diagnosis last December, the news came as a shock – Wayde had 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.
“The biggest challenge for us is getting our heads around the official diagnosis and what it means. When the reality hit it was like, ‘My goodness!’”
Next weekend (23-25 February) Wayde and Carmen will attend a camp in Matamata designed especially for children like him.
At the camp, run by Arthritis New Zealand, Wayde will 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 is like to have arthritis.
Carmen says the medication her son is now on has made a huge difference to his physical confidence and energy.
“We can’t get over the change in him. He’s adapted the way he does things and he shows great resilience and perseverance. With the medication, though, he’s gone ahead in leaps and bounds and is more determined than ever to try new challenges.”
The family has met the paediatric rheumatology team at Lower Hutt Hospital and Wayde will have regular check-ups in Masterton. Carmen says Wayde’s school has been very supportive too.
She is looking forward to meeting and comparing notes with other parents of children with arthritis at camp.
“I would like to hear about others’ experiences and how they are coping. I want to ask questions and get some answers as to what we can expect for Wayde,” she says.
