Tell us a bit about your family?
Our family consists of the five of us, Dad Steve, Mum Shona and our three lovely daughters Tyler who is 20, Jade who is 17 and Brooke who is 16yrs old.
How did you get involved with Cure Kids?
We were invited by Frances the CEO of Cure Kids at an event with Brooke’s Neurologist Lynette Sadlier where she was explaining her research into epilepsy and the difference it was making to children’s life. Lynette and Frances were very keen to have another ambassador who suffers from a form of epilepsy and Lynette thought this would be a great thing for Brooke to be involved in.
What has been the most challenging part of this journey?
Having to advocate for Brooke’s wellbeing with different departments and hospitals, especially around getting approval for life changing surgery in Australia. At times, we have felt very on our own managing Brooke’s seizures and other side effects as appointments with specialists can be 3-6 months apart and these do not help you manage day to day. GPs do not know enough about Brooke’s rare condition or the medications she takes to help us.
How has it impacted your family and life?
While we have tried to ensure Brooke takes part in every aspect of life like her sisters, at times when her seizures where particularly bad, we couldn’t always do what we planned as she need to rest before doing things which often meant the family could not go out together or things were postponed. Before Brooke’s first surgery she had uncontrollable rage behaviour and this was very difficult for us to manage and explain to others. People didn’t understand she wasn’t doing this on purpose or just being naughty as a 6-8year old. She often did hit out at her sisters during these rages and they found this difficult. Her older sister became very attentive to Brooke and we had to ensure she wasn’t missing out on her own activities. Jade our middle daughter still struggles seeing her sister have daily seizures as they bring back memories of how bad things used to be. We have had to take longer in getting Brooke to do things other children her own age do with ease. Brooke has struggled socially as other children struggle to cope with her daily seizures and often leave her on her own or exclude her from invites to activities like sleepovers. This has meant Brooke has become very comfortable being on her own and entertaining herself which isn’t always a great thing. With her school work we have had to help her come up with strategies to manage her school work to ensure she doesn’t get stressed which could cause seizures. This year being the first year of NCEA Brooke has had assistance when sitting externals to help manage her needs during a seizure. All through this though Brooke has always put her hand up to play sports with her peers and gives everything a go. She hates being treated differently and we have tried not to do this during her life. We treat her the same as her sisters and are preparing her to grow and manager her own life in the future.
Your family, and Brooke are so brave, how do you stay strong through the toughest of times?
From when we discovered Brooke was having seizures and then the full details of her rare condition we decided as a family we would always talk things through – that no one was to hold their thoughts or feelings to themselves. We were open and honest with Brooke and her sisters about what was happening and what treatment/medication she was having. We have always had the attitude that this is a part of Brooke but it does not define who she is. We have also ensured we talk about Brooke having a condition she needs to manage rather than her being sick. During our second visit to the Royal Children’s Hospital in Melbourne when Brooke was 13, she knew she was there for serious brain surgery but she also told us she knew there were a lot of children there who were in a far worse position than she was. Lynette Sadlier our Neurologist has also helped us and very much Brooke through the rough times. She has amazing empathy with Brooke and is always open and honest and has a great sense of humour which always helps.
What is the most important thing for your family?
To be a strong unit together and always be there for each other now and in the future. Whatever life throws at us together or individually, we will face things as one and support each other.
If you could have one wish, what would it be?
For Brooke to be seizure free! Also for every family who faces challenges to have these go away even just for the Christmas period to give everyone a chance to forget about these challenges for a while.
What is one piece of advice you would give to other parents / families going through a similar thing?
Ask questions of doctors and other health professionals and don’t give up when you aren’t happy with an answer, you are the best advocate for child and have every right to fight for the best for them.