Leanna and Bethany, with their parents and the new van.

Leanna and Bethany Mills are young women from Newcastle whose lives have been very different from normal.  In 1998, the two sisters, then 4 and 2½, developed a range of baffling symptoms similar to those exhibited by sufferers of cerebral palsy and Parkinson’s disease. They lost their ability to walk as their muscles were in a continual spasm.

The next years were a blur of specialist visits, both overseas and around Australia as doctors tried to diagnose the conditions. The girls and their family suffered social exclusion as many of their acquaintances thought the condition might be contagious. The stress of watching the girls deteriorate took its toll on the family. Doctors finally gave the condition a name – Primary Dystonia – and to this day the two sisters are the only people in the world with their unique cluster of  symptoms.

A RRT representative handing over the key

In 2004 the family discovered a specialist in Montpellier, France, who could perform an operation that had the potential to be lifesaving for Bethany and Leanna. An Australian news channel, A Current Affair, ran a story about the case and funds were raised to help them to travel over and benefit from the operation.

Bethany, whose condition at the time was more serious, underwent the surgery first. The surgery, called ‘Deep Brain Stimulation’ proved very effective for her and she was even able to walk out of the hospital. A few months later Leanna’s condition deteriorated and she travelled to France to have the same operation. Unfortunately she didn’t benefit as much and had to have a number of further brain surgeries. She still needs to use a wheelchair today and has been also diagnosed with Parkinson’s Disease. Both girls continue to need 6 monthly check-ups in Montpellier.

The RRT learnt of the family’s story in 2014 through 2GB presenter Ben Fordham who has taken a heartfelt interest to help the family. At this point Ben Fordham focused on  their need for a vehicle suitable to transport both the girls, their 2 sisters and their parents. The RRT spent a number of months working with Nick, their father, researching transport options and finding out how a car would need to be altered to suit the purpose.

RRT Members served a light meal to those who came to the handover celebration

In December 2014 the RRT were pleased hand over the keys to a Volkswagen Caravelle, which had been custom altered to exactly suit the family’s needs. RRT members had the opportunity to meet Leanna and Bethany and their mum and dad and were inspired by the girls’ bright spirits despite their ongoing life challenges.

At the handover of the vehicle – the Mills family, with representatives of the RRT

Recently the RRT received a message from Michelle, Leanna and Bethany’s mum, saying that she had had a day shopping with Leanna – for the first time ever – and it was made possible by the vehicle they had been given! The RRT looks forward to updates from the girls and we wish them all the best in future.

Some of the attendees at the handover celebration

You can help Leanna & Bethany, who still need support with ongoing medical and travel expenses, here: http://primarydystonia.com.au/donate-to-us/ .

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