Leanna (15) and Bethany Mills (13), are the only two children known in the world to have been diagnosed with the rare, progressive, degenerative neurological disorder, primary dystonia featuring their unique combination of symptoms. There is no known cure and treatment is severe and often debilitating.
Leanna, Bethany and their family’s plight was first made public on Christmas Eve 2004, when Fordham championed the cause on Channel 9’s A Current Affair hoping to raise enough money to fund essential treatment and life-saving surgery in France.
“With Leanna’s health declining rapidly, the family desperately needs funds to prolong and improve her life,” Fordham said.
“The aim of this campaign is to once again appeal to the generosity of all Australians, individuals and businesses to raise enough money to help fly Leanna to France where she needs urgent medical treatment,” he said.
“I will do whatever I can to help Bethany and Leanna. Despite the fact they make fun of me at every opportunity, I love them like sisters. We've managed to raise a lot of money for them over the years but they need assistance again urgently so Leanna can fly to France to have life-saving surgery,” Fordham said.
“When we first told the story of Bethany and Leanna’s unique life threatening circumstances and the need to fund surgery in France, ACA viewers were so moved by the suffering of these two little girls and the severity of their rare disorder, that they were compelled to help. Now with Leanna’s health failing, we hope they will want to help again,” said Fordham.
In 2005, thanks to the generosity of Australians, the funds raised allowed both girls to undergo the high-risk surgical procedure known as Deep Brain Stimulation (DBS) which involved the implantation of electrodes deep in their brains.
Connected by wires to batteries implanted in the girls’ abdomens, the electrodes send electrical impulses to specifically targeted parts of the brain aiming to minimise the excruciating muscle pain, excessive contractions, restricted body movement, tremors and spasms which cause their entire body to painfully twist in abnormal positions.
“For Bethany and Leanna, the DBS fuelled by batteries in combination with powerful drugs have had a short-term benefit with the outcome for Bethany being the most positive. However, Leanna’s treatment has not been so successful,” Fordham said.
“Having been recently diagnosed with Parkinson’s on top of the affects of her primary dystonia, without help Leanna’s outlook and quality of life is bleak,” he said.
Michelle Mills, the girls’ mother has been deeply moved by the compassion of Australians saying, “If it weren’t for Ben’s ongoing support and the many, many Australians who’ve helped us, Bethany would not be alive today.
“While Bethany still needs around-the-clock care, Leanna, is not doing very well at all. She’s in a lot of pain and it’s difficult for her to eat. Soon we’ll have to start feeding her with a tube. Her ability to speak is also deteriorating which means it’s very difficult for us to understand what she’s saying which is very frustrating for her. She’s so unwell, the involuntary spasms are causing her to fall over all the time. Leanna’s such a brave little girl but we’re afraid that unless we can continue to get treatment for her soon, we may not haver her for long,” Mrs Mills said.
Ben Fordham said, “We hope to raise enough money to get Leanna to France where she can have the only treatment in the world that can help her.
“Channel 9 viewers have been amazing and always seem to dig deep when Bethany and Leanna need a hand. Let's hope they get involved again!” said Fordham.
Every Australian has the chance to help this wonderful, brave young girl by making a tax deductible donation today.
Donations of $2 or more will be gratefully received and are fully tax deductible.
Donate today to the ‘Leanna & Bethany Primary Dystonia with DBS Charity Foundation’.
Website: mycause.com.au/millssisters Phone: 4032 7145 (from anywhere in Australia)
Mail: PO BOX 8005, Marks Point Post Office, Marks Point Road, Marks Point NSW 2280 Australia
For more information about Bethany and Leanna please go to: www.primarydystonia.org.au
To see the full story on today’s Weekend Today Show visit: http://today.ninemsn.com.au/article.aspx?id=8102516
To request an interview or photographs please contact Insight Communications
Clare Collins - Insight Communications
P: 02 9319 3844
M: 0414 821 957