Teen with JIA takes on London Landmarks Half Marathon to inspire others

Alex, 18, from Rugby, was diagnosed with Juvenile Idiopathic Arthritis (JIA) when he was just three-years-old and found information leaflets from Arthritis UK were really helpful. He’s taking part in the 2026 London Landmarks Half Marathon, in his manual wheelchair and supported by Mum Lynda, because he wants to ‘give back’ to the charity that does so much for young people with arthritis, and to inspire others to not let JIA stop them. 

A long road to diagnosis

Alex was just 12 to 18 months old when he started getting unexplained high temperatures and rashes at night that would have disappeared by the time his mum took him to the GP the next day, leaving medics baffled. Mum Lynda says, “One day he just couldn’t stand up so we went to A&E where they told us that he had ‘clicky’ hips which was common in young ones and that he would be fine.” 

Alex got to the point where he couldn’t physically pull himself up or hold his head up himself, and he continued to get unexplained high temperatures. Worried Lynda began to research herself and after hours on Google found information about arthritis in babies and young children, the symptoms matched so Lynda went back to the GP and didn’t leave until they got a rheumatology referral. 

In the months waiting for an appointment, Alex was admitted to hospital because muscle wastage left him unable to stand or walk alone. Lynda says, “He wasn't able to eat and drink because his neck was that bad, his head was sort of crunched down leaving him in an awful lot of pain. I remember it took an awful long time to get everything stable.”   

Living with the daily impact of JIA 

Alex now takes a biologic, Tofacitinib, along with paracetamol most mornings and evenings and prednisolone every day. In the last 15 years since diagnosis, he’s also had thousands of joint injections, a hip biopsy, cataract surgery for uveitis and a full ankle infusion last October. 

He is often woken in the early hours by pains and is in so much discomfort he’s unable to get back to sleep. He explains, “Sometimes I’m not able to stand properly because the pain in my hip or knee is really bad. I also often have joints that are hot to touch and swollen and all I can do is use heat pads and painkillers which, sometimes, makes it tough to get up and about because I can struggle to even get up and go to the bathroom as putting weight on my joints is unbearable.” 

Lynda says the unpredictability of JIA is one of the hardest things because Alex can be well going to bed at night then wake up in pain. She says, “There’s no rhyme or reason to it, he can have not overdone it, had a chill out day but still not be able to move the next day so we’ve learnt it’s taking each day as it comes really.” 

One significant impact has been on Alex’s growth, having been on steroids since he was just three, at 18 he is the height of a 10-year-old. JIA also impacted his education as he missed time at primary and secondary school due to illness and hospital appointments. He’s now studying performing arts and his college initially explained that they’d never had anyone in a wheelchair wanting to do a full-on singing, acting and dancing course. Lynda says, “When Alex found out they hadn’t got anyone in a wheelchair his response was, let me give it a go then.” 

Lynda says that, even though diagnosis and endless hospital appointments can feel overwhelming, it does get easier and it’s important not to be afraid to encourage children not to let JIA hold them back. She says, “They might overdo it and pay for it for a couple of days but they soon learn how to balance their sort of pain with what they want to do. It’s about letting them find their own way because they know their own bodies.” 

Taking on the London Landmarks Half Marathon to give back

Whenever Alex was starting new medication he’d be given information leaflets from Arthritis UK so researched the charity’s work which he left him ‘really inspired’. Then his Mum sent him an article about research into possible causes of arthritis being conducted by Arthritis UK and Birmingham Children’s Hospital. Alex says, “I remember recognising most of the doctors and researchers names that were involved and it really motivated me to want to give back to the charity that was working so hard to make a difference to people like me.” 

That’s why Alex is taking part in the London Landmarks Half Marathon this year for Arthritis UK which he says feels ‘quite daunting’ but he knows that mum Lynda will be with him all the way. Lynda says, “I’m incredibly proud, seeing him want to give back and show other children that have just been diagnosed that you don’t need to let it stop you, that you can do anything really when you put your mind to it.”