HANDS UP FOR
Our Children STORIES FROM THE RCH ISSUE 5: SUMMER 2017
RCH FOUNDATION NEWSLETTER
Brooke sitting tall at the RCH after DBS
BROOKE’S BATTLE At the age of nine, Brooke started losing control of her body. One day her shoulder dropped and soon walking became a struggle. At 14, she was no longer able to feed herself and remained doubled over, unable to straighten up. 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 lifethreatening full body spasms, or dystonic storms, that saw her rushed to The Royal Children’s Hospital (RCH) Emergency Department. “It’s the worst form of muscle cramp you can imagine and no matter what you do, you can’t release these cramps. Brooke would be exhausted from them, but she couldn’t get any relief. After one episode she looked at me and said ‘I’m broken’,” said Sue,
Brooke’s mum. Her RCH neurologist, Associate Professor Andrew 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. >> TURN TO PAGE 4 TO READ MORE ON BROOKE’S GROUND BREAKING TREATMENT