THEY are the sisters who captured the hearts of thousands when they were revealed as the only two children in the world known to be diagnosed with the painful and debilitating disorder primary dystonia.
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Now the parents of Leanna and Bethany Mills, of Pelican, have made a desperate plea for help to improve the quality of life for their "two very special girls".
A national campaign will be launched today to help raise funds for ongoing costs of care, essential trips to France for specialist treatment and a purpose-built home to accommodate the girls' wheelchairs.
"We have an electric wheelchair and Leanna so desperately needs it, but she can't use it because our house is so tiny. There's just no room," mother Michelle Mills said.
"It's the hardest thing not being able to help them. You'd do anything to put yourself in their place so they don't have to suffer any more."
The Mills sisters have been dealing with the rare, degenerative neurological disorder, which causes their bodies to twist and spasm, since 1998. There is no known cause or cure.
In 2005 the family travelled to France for a high-risk surgical procedure in which electrodes were implanted in the girls' brains and connected by wires to batteries in their abdomens.
The electrodes send electrical impulses to parts of the brain to minimise excruciating muscle pain.
June 16 will be the 17th time the Mills have made the expensive trip to France to replace the batteries that help to minimise pain.
"Bethy's batteries have gone flat and she's in tremendous pain," Mrs Mills said.
The Leanna and Bethany Primary Dystonia with DBS Charity Foundation is a registered charity and all donations of more than $2 are tax-deductible. To give visit mycause.com.au/millssisters, call 4032 7145 or send donations to PO Box 8005, Marks Point Post Office, Marks Point Road, Marks Point, 2280.
- Melissa Lyons
