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Elliie's incredible story - Sydney Children's Hospitals Foundation

Mina and Rob's little rainbow baby

When Marguerite was a baby she developed epileptic spasms that initially responded to medications. But at two and a half years, the epilepsy relapsed and progressed so that by the age of four, she began suffering from debilitating, tonic seizures.

“They could happen up to 100 times daily and were so unpredictable that you could be right next to her when her head slammed onto a table or she dropped backwards onto the ground,” says Marguerite’s mum Lindie. “She sustained the most awful injuries. She had to wear a helmet with a face guard every day and sit on a special couch at school with a full-time teacher’s aide – it was the only way to protect her. She couldn’t concentrate which meant her learning was compromised, and she lost the ability to write.”

Doctors in the Epilepsy Team at Sydney Children’s Hospital, Randwick tried multiple medications and a special diet. But nothing worked. The epilepsy persisted and Marguerite had no quality of life.

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“We spent our lives trying to keep her safe. When I dropped her at school I would pray I could pick her up in one piece later that day. It was painful to see what the epilepsy was taking from her.”

Determined to change the future for Marguerite, the team discovered that the epilepsy was arising from a large area in the left side of her brain. She would need to undergo neurosurgery to remove her left temporal lobe and disconnect the left side of the brain from the right.

“My biggest fear was that we would lose her, or permanently disable her and there would be no difference in the seizures.”

It was a major operation, but Marguerite’s parents trusted that her life could be changed in the expert hands of the Hospital’s Epilepsy Surgery Team.

“There were no guarantees that surgery would improve her seizures but there was no alternative. Whatever deficits she would be left with after the surgery would be a far better outcome than where Marguerite was heading. But we had faith in our team and the decision they had made.”

“For children with aggressive cancers, 70% will die before their next birthday so there is an urgent need to try a different approach. Zero Childhood Cancer brings the best researchers and doctors together from all around the country to try and give new hope where previously there was none. So far over 140 children have benefited from the world-leading program.”

- Professor Tracey O’Brien, Director of the Kids Cancer Centre

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