"As a mother or father you know when something is wrong with your child. Hopefully anyone reading this will never have to wait this long to be put on the right path. But keep asking and keep going."
Mckenzie had just turned 5 when we noticed something wasn’t right. He woke up one morning crying and in so much pain - he could not get out of bed and straighten his legs. I took him straight to A&E.
After many hours at the hospital, we didn’t get any further with finding out what was wrong, I was back and forth there for about two weeks. He was unable to walk.
I had to carry him everywhere, and he was missing a lot of school. It was coming close to his school Christmas concerts and he was a wiseman. He was determined to be involved and I can remember him limping down the aisle looking so awkward.
The doctors finally agreed to refer him to a specialist. It was more than six months after his first symptoms when he finally had an appointment. Mckenzie was on top form that day and I remember coming out of the appointment nearly crying. It was as if I had made it all up! A 6 month wait and no help yet again.
School could even see something was wrong when some days he’d just sit and watch his friends play and couldn’t join in.
The next few years involved a lot of visits to the GP and being referred. I’m ashamed to say it but sometimes I didn’t take him to the doctors when his legs were bad because I knew, and he knew, it would amount to nothing, just like before. Mckenzie would say himself that there was no point – it was heartbreaking hearing my son say that. I asked the doctors outright on a few occasions ‘could it be arthritis?’ to be told NO! But we were given no other explanation.
There is so much more I could say about those first few years.
Skip forward to just after Mckenzie’s 9th birthday and yet another doctors visit. I took him because he was in so much pain and he was starting to feel self-conscious about his walk, especially when he was having a bad couple of weeks. We got to see a different GP and she listened and said she’d refer him... I thought ‘here we go again’ but this time a letter came for an appointment in January. That was super quick compared to normal. It was in a different hospital this time too... things were starting to look up.
We went along and Mckenzie was thoroughly examined. No doctor had ever done an examination of him like this in the past. He explained 3 possibilities and quickly ruled out 2. He didn’t say at this point it was JIA which was the third possibility. He prescribed Mckenzie some medication and sent him for blood tests and referred him for an MRI scan. We couldn’t believe it, someone was actually listening to us. Mckenzie’s MRI was in March 2020 and that’s when he was diagnosed with JIA – Juvenile Idiopathic Arthritis. We were absolutely gutted for him but also relieved; a very strange feeling.
After 5 long years of pain and discomfort, his condition is now being managed most of the time thanks to his awesome doctor. We’d like to say to Mckenzie’s amazing doctor - thank you for listening and seeing what was wrong when no one else did.
He’s had regular physiotherapy and eye checks to monitor for uveitis (his eyes have been fine so far). At the moment his wrist and arms hurt sometimes and we are currently awaiting an appointment this week.
We’ve had a few ups and downs through Covid but his doctor has been great and always seen him or been at the end of the phone. He has an appointment next month to discuss joint injections.
As a mother or father you know when something is wrong with your child. Hopefully anyone reading this will never have to wait this long to be put on the right path. But keep asking and keep going.
I’ve read that JIA is an invisible disability and to look or see what Mckenzie has achieved that is so true. You wouldn’t know unless we told you.
Throughout these last 5 years we’ve kept Mckenzie super active and that’s helped him keep strong. He races motocross and competes in jujitsu competitions and has won many trophies and medals. He also does boxing!
Although initially unaware of what was wrong with Mckenzie we’ve always used the motto and said to him ‘come on boy, walk it off’. We know that is easier said than done but this has helped him massively and we couldn’t be prouder of our little warrior.
Anything is possible, don’t let anything stand in your way.
Dream - believe - achieve.
If you are concerned that a child may have JIA and would like to know more, please visit www.thinkjia.org