Cutting edge care for complex movement disorders

In March 2017, Associate Professor Andrew Kornberg completed a fundraising adventure like no other — Fly for the Kids.

A much-loved paediatric neurologist at The Royal Children’s Hospital (RCH), A/Professor Kornberg has cared for patients affected by neurological conditions for nearly 30 years. Combining his dedication to children’s healthcare with his love of flying, A/Professor Kornberg circumnavigated Australia solo to support cutting edge care for patients affected by neurological movement disorders. These life-limiting and progressive disorders cause muscle weakness, uncontrollable violent movements, twisting postures and/or spasms that profoundly impact on the quality of life for these children and young people, as well as their families who care for them.

“The money raised through my journey will hopefully give children affected by movement disorders freedom from their disease and the ability to be free to do anything they want,” said A/Professor Kornberg.

Brooke’s battle

One A/Professor Kornberg’s brave and courageous patients battling a movement disorder is Brooke Kennedy. Born with a rare and degenerative movement disorder called dystonia, Brooke suffered from unrelenting muscle cramps that twisted her into uncomfortable positions and movements. Occasionally, these muscle cramps became life-threatening full body spasms, or dystonic storms, that saw her rushed to the RCH Emergency Department.

A/Professor Kornberg, tried numerous medicines and treatments, but nothing worked. Brooke’s only option was Deep Brain Stimulation (DBS), a surgical treatment that disrupts the abnormal brain activity which causes dystonia. DBS consists of an electrode implanted into a patient’s brain and a pacemaker-type device called a pulse generator, which produces electrical impulses via the electrode that override the abnormal brain activity. Brooke is the first RCH patient and third young person in Australia to receive DBS.

“Brooke has gone from being totally dependent on her family to doing things that she hasn’t done in six years, like walking,” said A/Professor Kornberg.

The Complex Movement Disorders Program

Determined to help patients like Brooke receive the world leading care they deserve, A/Professor Kornberg started Fly for the Kids to support a Complex Movement Disorders Program (CMDP) at the RCH. Launched on 4 July, the CMDP features a multidisciplinary team of neurologists, neurosurgeons, developmental medicine specialists, rehabilitation specialists, orthopaedic surgeons, and allied health professionals like physiotherapists, occupational therapists and neuropsychologists working together to provide comprehensive and world-leading care.

“Currently children with complex movement disorders are seen in various clinics around the RCH. In the CMDP, research and clinical care will be run side by side, and having this expertise in one place will have an incredible benefit to these children and families. I am sure that, through the Program, we will make great strides in the treatment of these disorders.”

Support the Complex Movement Disorders Program