Epilepsy awareness appeal

Mother Jessie-Lee Benson with Shakira, brother Vanderlai and father Kenny De Souza. Picture: Diamond Images
Mother Jessie-Lee Benson with Shakira, brother Vanderlai and father Kenny De Souza. Picture: Diamond Images

The family’s ’emotional rollercoaster’ began on an early morning in December 2011 when Ms Benson awoke to check on her baby son and heard a noise from daughter Shakira’s bedroom.

‘I looked down the hall, I knew something was wrong,’ she said.

‘I ran to her (Shakira) room and noticed her lying on her side, I couldn’t see anything at that time but when I rolled her over my world flipped upside down.’

Shakira was suffering a tonic clonic seizure, which did not stop until paramedics arrived to administer medication. A small brain haemorrhage caused another seizure six months later and left Shakira with a mild form of cerebral palsy.

Doctors prescribed medication but the fits continued.

‘I had enough of seeing my beautiful girl go through all the monthly seizures and her emotional behaviour changes, so I made the tough decision and took her off her medication,’ she said.

‘Within one month, we could see a big difference and she went seizure free for six months.’

The specialists told Ms Benson some medications could increase seizures, but had not previously mentioned this side effect or suggested another medication.

‘I ran a fundraiser as there are no answers to epilepsy and it’s an ongoing battle to figure out how to correct the brainwaves that create the seizures,’ she said.

‘Anyone can help raise money and you don’t have to be a big corporate company to make a difference.’

Fifty people attended the fundraiser this month, which helped raise almost $2500 for Epilepsy Action Australia.