Lucien’s Story

When I look at a photograph of my boy just before his 3rd birthday, he’s like a live wire, bursting with energy. That’s the way we see young kids. Yet my kid has what’s called Systemic Onset Juvenile Idiopathic Arthritis which is the rarest form of JIA and can have the greatest impact.

Multiple joints can become inflamed and also the blood, which in turn can affect organs and in certain circumstance be life threatening.

3 is a very young age for one’s body to freeze up, to be in pain and to find oneself in a hospital environment amongst strangers in isolation. It’s a very young age to be pinned down in a chair while a needle or cannula is stuck in. From the nurse’s point of view, 3 is a tiny person to take a blood sample from since little veins are not always yielding. And scared kids are difficult to reason with.

The first few months and years of living with JIA are testing. All the ordinary changes you expect as parents: going to preschool or school, growing, potty training, normal sleep, changing interest in food, growing independence or confidence: these are turned upside down.

I remember being chastised on more than one occasion for pushing my son around in a pram because he was ‘too old for a buggy’. I wasn’t going tell a stranger he had inflamed joints. Instead, I swapped the buggy for a scooter with a little platform attached. This made a fun and novel way to get around, as we could slide down the streets together at high speed. The consultant was happy, at least he was standing! It gave the right message.

Play dates were difficult, most obviously when it came to food. He either wanted to eat everything in sight because of the hunger induced by steroids, or leave well alone because of nausea triggered by a drug.

There’s something so alarming about having JIA, that can attack young bodies so drastically. It can shrink their world making it difficult to go to school, to socialise, to grow in the largest sense.

Any child with a serious illness is very aware of their own fragility and dare I say, mortality. But they’re too young to deal with it emotionally. Hell, most adults can’t. In the early days of uncontrolled illness my son frequently asked if he was going to die. He wanted to know what happened after death. Would he still be him when he returned to the earth?

At first, I was alarmed and struggled with it. Then I realised this is one of the hidden riches of such an extreme situation. We turn in on ourselves to ask important questions.

Kids isolated by illness often become far more creative, empathetic, or wise. They may become fascinated by the body and mastery of the body in different ways like through medicine or science. In my son’s case, he became interested in how power expresses itself in nature, by carnivorous plants and poisonous spiders, a symbol of power he could relish and which he personally felt he lacked. Alternatively, kids may turn to the spirit, expressing it through the arts, or through a sharpened sense of humour or heightened sense of fun.

So, there is real and impressive growth with childhood illness. Not the obvious milestones, not the growth we asked for, something more profound.

Anne Gilbert, JIA-at-NRAS Service Manager spoke with Lucien’s mum, Annabel, and she said that Lucien’s arthritis is well managed, and he is doing fine, which is great news. Annabel and his consultant believe Lucien’s treatment plan, which included a biologic early on in diagnosis, has really made a huge difference to his long-term outcomes and wellbeing; and even though he still suffers some side effects from the drugs, and has to visit hospital regularly, he is a happy little boy and slowly but surely catching up at school (with extra help from mum and dad) and has a really great friendship group.