Small Steps

In June 2003, my 13-month-old baby boy stopped trying to walk, stopped cruising, stopped crawling, and started crying and clinging.

So began our journey with juvenile idiopathic arthritis, or JIA – a long, hard, often lonely road, with no end in sight just yet.

We'd known since he was six months old that something was not quite right; at that time, he'd been diagnosed with iron-deficient anaemia and cow's milk protein intolerance.

Then, at 13 months, our son's left ankle swelled up right before my eyes. But it wasn't until B was 19 months old that he was diagnosed with JIA, which the doctors in hindsight say was probably causing his symptoms when he was six months.

B didn't start walking until he was 21 months old. Now, nearly five years later, we are still treading carefully with this disease.

JIA is a cruel, chronic, sometimes crippling childhood illness. The term refers to all types of arthritis that affect children.

Too many kids with JIA are written off as being whingy, lazy, or slow to grow. JIA is often misdiagnosed as 'growing pains'.

At first, B was diagnosed with 'pauciarticular' juvenile rheumatoid arthritis, a type of JIA that affects four or fewer joints. His diagnosis has since been upgraded to 'extended oligo JIA', since the disease has spread to more joints.

JIA is felt by every member of the family. The affected child often cannot describe what they are feeling, since the average age at onset is just two years old.

Parents may go through a guilt and grieving process as they blame themselves for either causing it, or being unable to cure it.

And siblings have their own emotional rollercoaster ride as they see their brother or sister getting extra attention for their pain.

But since JIA is not hereditary, it has the added effect of making one feel incredibly alone.

Now, I am not one to sit back and suffer in silence – I want to know the answers, and will keep asking until someone can give them to me. I want to share my knowledge and support with others too.

If I did not turn the despair that I have sometimes felt into positive energy, I would just be a little saline puddle on the floor.

I'm still trying to find the answers to many questions, but I've spent a lot of time on the phone sharing what I do know with other parents of newly-diagnosed children (what can I say, I like to chat!).

And I've set up an Australian online support group for JIA, which now also has members from all over the world. Anyone, at any time of any day, can post a query, or have a cry, and someone is 'listening'.

There is little real awareness of JIA in our community, either among the general or medical population. So I designed a logo with the message that "Kids get Arthritis too!".

We wear it every day, as a kind of walking billboard. It starts a lot of conversations!

When I learned that JIA is actually more common than type 1 diabetes, cystic fibrosis, or cerebral palsy – yet was not automatically eligible for the Centrelink Carer Allowance like these other illnesses – I fought for it to be so.

When I realised there was no branch or organisation specifically to help JIA children and their families, I bothered our state Arthritis Foundation until there was one.

When I saw how far many families have to travel to get treatment, I started working with my state and federal politicians and our local children's hospital, to get regional JIA clinics operating.

And when I heard about some awesome parents in the United States who'd set up the American Juvenile Arthritis Organisation (now JA Alliance)– which has an annual conference that brings together families from all over the USA – well, I knew we had to start fundraising and get a passport!

Our trip to Pennsylvania in June-July 2007 convinced me of two things:
• Australia is not so far behind in its medical management of JIA – in fact, in some ways we are ahead. (B's health team is fantastic!)
• We still have a way to go to get a national organisation and conference such as the AJAO happening here.
(I also learnt that five-year-olds are intrigued with public rest rooms, but that's a whole other story!)

In amongst this advocacy, I work two other jobs, and I have the everyday demands of being a wife and mother.

I dread having to give B a needle in his little tummy every week, and struggle with the fear of side effects of the various medications he must take.

I hate having to hold him down for blood tests and other medical procedures. I get tired of rounding up the kids for yet another trip to hospital. And I despair at the stares in the street, and the bullying that B suffers at school.

But while I absolutely despise this disease, I will not let it stop us from loving life.

I try to enjoy every day. I relish every time I hear my kids laugh, or see my son try to run.

And at the end of the day, I feel a kind of humble pride that I can make a difference.

Jx
©2008