LIKE every proud mother, Claire Bell remembers eagerly anticipating her daughter Ava’s first footsteps. “She was pulling herself up and standing all the time; she kept trying to move, so we were expecting her to take her first proper steps any day,” says Claire, thinking back to 2011 when Ava was just ten months old. “Then she suddenly stopped standing altogether and started to ‘spider-crawl’ everywhere to avoid bending her knees.”

This alone didn’t give Claire cause for concern. Having already had a son, she was fully aware of the abilities of pre-walkers to find ingenious ways to move from A to B. However, with hindsight Claire now realises that Ava’s method of crawling with straight legs - together with her marked dislike of nappy changes when she had her legs held up - signalled early warning signs for a diagnosis that would see her daughter need numerous operations and a cocktail of medication.

“One day when Ava was 14 months old she sat on my knee and played the whole day. I noticed her knees were red and swollen, and she didn’t move from me. That’s when I knew something was wrong,” says Claire, 35, from Sedgefield, County Durham.

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A call to the local health visitor quickly resulted in an appointment with the GP and a referral to Newcastle’s RVI Hospital. Two months later, Ava was diagnosed with Juvenile Idiopathic Arthritis (JIA), an autoimmune disease that causes inflammation and swelling in the joints. Her legs became fixed, unable to bend or fully straighten, and she was in increasing pain that would keep her awake at night.

“It was such an awful time for the family. The worry for the future, the shock of how quickly she had deteriorated and the surgery that followed really took its toll. Watching our little baby having to be put to sleep for surgery was heart-breaking,” says Claire.

Ava, now seven, has JIA in her knees, both elbows and her left wrist. To date she has needed five operations and has weekly injections of drug Methotrexate, an immune system suppressant more commonly known for the treatment of cancer. She also takes an anti-emetic to limit the sickness after the injections and has drops in her eyes daily to treat associated condition Uveitis, an inflammation of the middle layer of the eye.

“Because Ava takes an immunosuppressive drug, we have to be really careful,” explains Claire. “She can’t have any live vaccines and we have to really be vigilant to ensure she doesn’t catch any bugs that her body would struggle to fight on its own.”

Juvenile Idiopathic Arthritis affects around 12,000 (1 in 1000) children in the UK. While there is no cure, with treatments focusing on relieving inflammation and controlling pain, it is possible that Ava will grow out of the condition when she enters adulthood.

American actor Clark Middleton, best known for his supporting roles in The Blacklist, Sin City and Kill Bill: Vol 2, recently opened up about the lesser-known condition and his battle against JIA, having been diagnosed back in 1961, then aged four. Hospitalised repeatedly as a child and warned he would be wheelchair-bound as an adult, Clark had ten joints replaced and underwent 14 surgeries. He credits his father’s attitude in his fight not to let JIA define or inhibit him.

“My dad refused to let me quit,” Clark said in an interview for the Arthritis Foundation earlier this year. “He constantly instilled in me that I could define my own reality by how I thought about myself and how I carried myself. He wouldn’t allow me to think of myself as a victim. He taught me a lot about determination and courage.”

Claire, who also has son Jack, 15, and daughter Amber, three, recognises a similar fortitude already in Ava, who enjoys school, swimming and Brownies like many other youngsters her age.

“Having arthritis does scare Ava, and her legs hurt when she walks or runs, but she is so positive and a very determined little girl, with the brightest smile,” says Claire. “She really tries not to let the condition affect her. She is so resilient and very enthusiastic.”

While the prognosis for Ava is uncertain, Claire is cautiously optimistic about her future and has garnered support from the Children’s Chronic Arthritis Association (CCAA), a charity run by people who have been affected by JIA.

To raise awareness and money for CCAA, Claire has organised for pupils at Ava’s school in Sedgefield to dress down tomorrow to mark World Arthritis Day. She hopes that funds raised at Hardwick Primary School will be matched by her employer Santander.

Claire also wants to set up an online support group for families affected by JIA. Anyone interested in contacting her about the group can do so by emailing clouisebell@gmail.com.

W: http://worldarthritisday.org

WHAT DOES JIA LITERALLY MEAN?

Juvenile: A child who was aged 16 or under when the problem started

Idiopathic: No known cause for the inflammation of the joints

Arthritis: Inflammation, swelling and reduced movement in the joints.