The West

Mums fight for kids cures

Most children dread having the occasional needle but for Sophie Edwards and Conor Brown regular injections are part-and- parcel of their battle against incurable rare conditions.

Conor, 9, is the only person in Australia with lymphangiectasia, an unusual condition where the lymph system is not formed properly, resulting in fluid seeping into his tissue.

Diagnosed at four months, his condition means endless medical appointments, weekly injections, chronic headaches and a restricted diet of no more than 10g of fat a day.

Sophie, 8, has juvenile arthritis and avascular necrosis affecting her wrists, hips, knees and ankles, causing her bones to slowly crumble.

That means being in pain every day and for a little girl terrified of needles, she faces three-monthly infusions, fortnightly injections and six-monthly MRI scans.

Some days the pain is so extreme she cannot walk and relies on a custom-made wheelchair to move about.

Like Conor, there is no cure for her in sight.

But their mothers Samantha Brown and Aydee Edwards are not giving up, launching a WA-based charity, Hope Warriors Foundation, in a bid to find cures for their children and others with rare conditions. The families first met in 2012 when Conor and Sophie were chosen to star as the Telethon Little Stars and they just clicked.

"The aim of the new foundation is to raise much needed awareness and funds so that research can be conducted specifically for children affected by different and rare conditions," Mrs Brown said. "Children with rare diseases generally don't benefit much from child health research, as it doesn't contribute to cures for their specific diseases."

The foundation is being launched to coincide with tomorrow's Rare Disease Day.

The West Australian

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