Leanna & Bethany Primary Dystonia

Australian sisters Leanna (15) and Bethany (13) Mills are the only known children in the world to be diagnosed with the rare disorder, primary dystonia featuring their unique combination of symptoms.
 
There is no known cure and treatment is severe and often debilitating. Leanna and Bethany’s symptoms are a painful combination of cerebral palsy and Parkinson’s disease resulting in excruciating muscle pain, contractions, and spasms causing their entire bodies to twist into abnormal positions.  

As a family, the Mills have struggled on a day-to-day basis to fund care and treatment.  We are fundraising to improve the quality of life for Leanna and Bethany and to fund their costly ongoing treatment.

Bethany, Leanna and their family’s plight was first made public on Christmas Eve 2004, when journalist Ben 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, Deep Brain Stimulation.

In 2005, thanks to the generosity of Australians, enough funds were raised to allow 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.  They are the only Australian children known to have undergone this complex procedure.

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 more information visit: www.primarydystonia.org.au/

Symptoms Of Bethany & Leanna’s Primary Dystonia:
• Both Bethany and Leanna suffer severe and painful disabilities
• Both are reliant on 24 hour care and mobility support including wheelchairs
• Leanna has extreme difficulty with eating and drinking and is losing her ability to communicate
• Bethany has serious pain in her shoulders, which is escalating as the condition continues to develop

Both girls experience:
• Painful muscle contractions affecting their entire bodies
• Uncontrollable and spasmodic limb movements
• Restricted body movement and extremely stiff limbs
• Twisting and distortion of body parts
• Shaking and tremor
• Voice and speech difficulties (particularly in Leanna)
• Muscle deterioration

What is Dystonia & Who is Affected?
• Dystonia is a chronic and disabling neurological disorder in which sustained muscle contractions cause the spasmodic distortion of the body
• Dystonia has multiple causes and can affect different parts of the body, making diagnosis difficult
• Primary dystonia has prevalence mainly in young people. The average onset of dystonia is approximately 12 years, with the median age between 9 and 11 years
• Primary Dystonia is presumed to be genetic in cause, though no genetic links have been proven by specialists in Leanna and Bethany’s case