Like many Kiwi kids, Jackson Singh (13) is sports mad. Running around the school field with his friends, tossing a rugby ball and even riding his motocross bike are among his favourite things.
But Jackson has had to scale back on sports because of the intense pain that overcomes his joints. He may just be a teenager, but Jackson suffers from juvenile idiopathic arthritis (JIA).
Arthritis is usually associated with those of a much more advanced age, but juvenile arthritis affects roughly one in 1000 children. The cruel aspect is that it is usually diagnosed at a time in these young people’s lives when they should be at their most active. Instead, they face crippling pain.
Jackson remembers well the first night he experienced that sudden pain. He was just eight.
“I had been riding my pushbike that day and I woke up in the night with this really bad pain in my knee.
“I wanted to go to the toilet, so I crawled out of bed and I just couldn’t even stand up,” he remembers.
Jackson had to crawl on one knee to get to the bathroom before his parents woke and discovered him struggling. When the light was switched on, the family saw what was causing the problem.
“My knee was all swollen,” he tells. “My parents carried me out to the couch. It was a really bad pain. I couldn’t walk on it or anything, so dad carried me to the truck and they took me to the hospital.
“I was just confused because I had no idea what was happening.”
For his dad Mike (47), the experience was frightening.
“I was panicking and freaking out. It was pretty devastating. Jackson was crying and then he couldn’t even get out of bed, so I had to carry him.
“Any parent would be upset about this. He said to me ‘Dad, I might not walk again’.”
Understandably, Jackson gets emotional talking about this tough time in his life. As a keen rugby player, Jackson was a prop. But he has had to give up the sport he loves because of its rough contact nature.
“It’s made it harder to do things with friends,” he says, although he’s quick to add his friends understand his predicament. “The pain is on and off, some days there is more pain than others.
“But you just have to deal with it. I have medication but it doesn’t really help that much,” he says of the regular anti-inflammatory pills he must take.
Mike adds, “There was quite a difficulty with him getting out of bed and going to school, and he had to separate himself from the kids at school.”
Jackson was diagnosed with juvenile arthritis after being rushed to hospital.
In a twist for the Rangiora father and son, the diagnosis wasn’t a completely foreign concept for them. Mike also had juvenile arthritis as a teenager in the form of ankylosing spondylitis, a disease that causes inflammation of the joints, especially the spine.
No-one knows how children contract JIA, but what doctors do know about the autoimmune disease is that half of children reach adulthood having grown out of the disease. They also believe it isn’t hereditary.
“I had a feeling it might be arthritis, and sure enough it was,” tells Mike.
“I was one of the lucky ones who grew out of it. Every now and then I get a backache, but for Jackson there’s a chance he may never come right.
“It has strengthened our relationship, for sure, and we’ve talked through the bad times because I’ve been through it, so I do understand,” says Mike.
Mike knows how Jackson feels as he, too, was diagnosed with arthritis.
“My dad tells me about his experience, what he did and how he dealt with it,” says Jackson. “He gives me good advice.”
The youngster has managed to hold onto his other passion, motocross. Whenever he gets the chance and the pain isn’t too bad, Jackson is out on his off-road motorbike and Mike is adamant that he doesn’t want to wrap his son in cotton wool.
“I love doing motocross,” says Jackson, “because the pain isn’t so bad when I sit down.”
“I’m telling him that he needs to keep moving,” adds Mike.
“I’m trying to encourage him regardless of his pain because it does get his mind off it too.
“We also do a lot of fishing and jetboating, so it’s really about getting him out there and being as active as possible.”
Tragically, there is no cure for juvenile arthritis. But the Singhs are determined to make sure Jackson isn’t held back by his disease and they try to manage it appropriately through diet, medication and movement.
“We’re always looking for a proper cure and we’re always doing research, that’s for sure,” Mike says adamantly.
