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Help Emily raise funds for innovative epilepsy treatment

Help Emily and others living with epilepsy access innovative treatment

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Four years ago, the life of local Logan school girl, Emily Haber changed dramatically. 

At only 14 years of age, Emily was like any other teenager until she began to experience minor, sporadic black outs. 

Shortly afterwards she was diagnosed with epilepsy.  Her condition escalated quickly and soon she was suffering debilitating seizures numerous times a week.

On 27 November, with the help of the Mater’s Advanced Epilepsy Service, Emily will undergo an innovative diagnostic procedure, known as Stereotactic EEG (SEEG).  The SEEG aims to help identify where the epilepsy is located within Emily’s brain and will help Mater’s doctors develop more precise treatment options for her. 

Mater Centre for Neurosciences epileptologist Dr Sasha Dionisio said the SEEG procedure enabled doctors to monitor activity within the brain and provided more information about what the patient experiences during seizures.

“The technique involves inserting electrodes in the patient’s brain, which enables us to accurately locate the seizure source and later helps support greater precision in the removal of affected areas. 

“The SEEG procedure has already helped up to eight Queenslanders living with epilepsy and is providing new hope for epilepsy sufferers, particularly those previously unresponsive to medication.” 

Emily said she wanted to share her story so other sufferers know what amazing work was being done at Mater to help them to regain their lives. 

“Mater Centre for Neurosciences is one of only two hospitals in Australia which offer the SEEG procedure and they have been so good to me.  I feel like I have a way forward.”

“During the past few years, everyday has been a challenge.  Having this condition has taken away my energy and my independence. 

“I am hoping this procedure will help identify an effective treatment so I can live a normal life.  All I want is to be doing what other teenagers are—to go to university and drive a car,” she said. 

To support Emily’s journey and help raise much needed funds for epilepsy research at Mater, Emily has set up a GoFundMe page.

“Please make a difference and support people living with epilepsy within the community, like me,” she said.

All funds raised go to supporting Mater’s Advanced Epilepsy Service, to continue treating patients like Emily who suffer from epilepsy.

Mater is now the largest SEEG provider in Australia. Mater receives patient referrals from rural and far north Queensland, including Townsville, Mackay and Bundaberg and, in collaboration with the Princess Alexandra Hospital, the referrals from Metro South have increased significantly.

To support Emily visit www.gofundme.com/shaving-my-head-for-epilepsy.

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