The hardest thing in the world for any parent is seeing their child suffer.

“We heard him banging, thrashing against the wall,” says Peta. “We were panic-stricken, terrified. Watching anyone have a seizure is scary but when it’s your own child, I think you have to block out the pain. Otherwise you wouldn’t survive.”

This was the first of many sleepless vigils for Harvey’s parents after their active little son was diagnosed with epilepsy.

“People used to comment that it must be peaceful when he goes to sleep,” says Peta. “But that’s when our stressful watching and waiting began. Every sound, we’d be up to check on him.”

Within 12 months, medication was controlling Harvey’s seizures completely. But last Christmas when Harvey was 10 they returned, worse than before – occurring in the day as well as night, and along with convulsive ‘tonic clonic’ seizures he developed ‘complex partial’ seizures where he loses awareness and becomes disoriented.

The hunt for effective treatments began, a chaotic and pressured new round of multiple doctor’s appointments and medical tests – some invasive, scary and painful for Harvey.

By April, the normally positive family was reaching breaking point. Then, searching for a parent support group, Peta found Epilepsy Action Australia. She rang and was immediately recommended a unique weekend Family Camp that supported every family member’s individual needs.

Our Family Camps are part of a residential program that aims to deliver therapeutic benefits and foster personal growth through peer support, education and organised activities. Before camp, Mum, Dad and kids were all in need of new ideas, fun and bonding with peers who ‘got’ where they were coming from.

Peta and Neil had felt isolated and alone, battling a condition other people didn’t really understand. They were at a loss trying to give Harvey and his 13-year-old brother Hugh as normal a life as possible, while shielding Harvey from the potential harm of an unexpected seizure. Seizures traumatise both boys. Harvey thankfully can’t remember his seizures, but being sick for hours after does upset him.

“On the Family Camp, just meeting other families and sharing common feelings and situations was empowering,” says Peta.

The safe but challenging adventure activities were also great fun and let each family member explore their strengths and build self-esteem. Harvey especially could enjoy freedoms his parents struggle to give him. “If we’re not watching, Harvey’s seizures could be life-threatening,” says Peta. “Simple things need constant supervision. We don’t want to wrap him in cotton wool but it’s hard to give him wings. So it was lovely to see him having a ball at camp.”

The family can’t wait for the next camp and are grateful for the memories and the friendships they’ve begun with others affected by epilepsy. Peta is planning an Epilepsy Awareness Session when Harvey reaches high school to show teachers and other students how to help with seizures. This will support the school, Harvey, and his parents, easing their anxieties about those long days when he’s away from them.

Like Harvey, up to 30% of people diagnosed with epilepsy will continue having seizures despite treatment, the unpredictability of seizures causing substantial ongoing disruptions in their daily lives.

In reading this, I hope you grasp the difference your help makes. Now I encourage you to give again, in the knowledge your contribution will be of immense personal benefit to many living with epilepsy.

Thank you for your past support and please consider making another generous donation today.

Yours sincerely,

Carol Ireland
Chief Executive Officer

PS. I hope you enjoy the newsletter enclosed. You’ll find out more about Harvey and other people your generosity has helped. Thank you again for your wonderful support.