My 10 year-old niece, Madeleine is doing a fun run this week. Nothing remarkable there, you might say. But what if I was to tell you that she has arthritis – and the fact she walks at all – let alone performs in ballet eisteddfods, does gymnastics and takes part in fun runs is nothing short of a minor miracle?
It’s a funny thing this juvenile arthritis: an old person’s affliction in the joints of the young. It’s a strange thing to get your head around. And as a result, despite the fact that in Victoria alone there are more than 54,000 people under the age of 25 living with arthritis, it’s a little known and poorly funded area of childhood health research.
I still remember the day when Madeleine was diagnosed. It was just after her mum and dad – my sister and brother-in-law – had spent Christmas with me in Paris. It was a typically cold Paris winter, and my brave little niece – two-years-old at the time – had spent four weeks wandering the cobbled streets of the City of Light suffering ever-decreasing mobility.
We walked and walked her around that city – completely unaware her little joints were seizing up with every step and with every drop in temperature. And she never complained.
Because how do you know you have reduced mobility if you’ve never had full mobility from the almost your very first steps? How do you know that it hurts to walk if pain in your knee joints is all you’ve ever known?
Things are much better for my brave little god-daughter now. As part of a drug trial, her symptoms have abated – her condition is manageable. She runs around the school playground like any other kid her age. She loves her ballet dancing and is partial to the odd spot of hip-hop. She jumps, she climbs, she rides her bike. The drug trial has helped to ensure she has as normal a life as possible: but the costs are prohibitive and the spectre of weekly injections hangs over her like a cloud.
Which is why I will be cheering her on this coming Sunday as she joins the masses taking part in Run Melbourne and raises money for research into juvenile arthritis. Because she’ll be doing it for the many thousands of other kids around Australia who suffer from this often debilitating condition. And because, just by being her relentlessly sunny self, she is an true inspiration to me.
To find out more about Juvenile Arthritis visit Athritis Victoria.
To get behind Madeleine and her fundraising efforts this weekend, visit Run Melbourne
