What is your connection to epilepsy?
Our son Jack is 13 and was diagnosed at 12 with generalised genetic epilepsy with tonic-clonic, absence and focal seizures
When and how was it diagnosed?
He was diagnosed in March last year after his grandfather passed away by Dr Malone at Queensland Children’s Hospital. It was after his second unprovoked tonic-clonic seizure in the space of a week. Jack continued to have tonic-clonic seizures until the medication was completely titrated.
What is the current treatment and are there any side affects?
Jack has been on a number of meds that came with horrendous side effects. Keppra gave him rage and massive weight gain, then cognitive and concentration decline came with Epilim. Needless to say, he is off both of these meds and is on Zarontin and Lamotrigine. These have also come with side effects of rashes, breathing issues, mood swings, fatigue and general functioning decline. He now suffers with iron depletion, which makes him extra exhausted. Jack has played soccer since he was five and now struggles with fatigue, breathing issues and motivation, impacting his game and his daily confidence.
What daily challenges are faced?
Jack was diagnosed the first year starting high school. This comes as a challenge for any child, let alone one with a disability. He’s faced difficulty with acceptance and just trying to fit in. Jack has many days off school due to his epilepsy and ongoing medical treatments such as Neurology and Paediatric appointments, ongoing EEGs and Psychology. Jack has had ongoing learning decline, his schoolwork is heavily scaffolded and is on a modified curriculum. He has support in every class with reading, writing, spelling and maths all significantly impacted.
His memory is hugely impacted in all areas from remembering which classes he’s to go to and what belongings he needs for each class. He frequently loses his belongings, his organization skills are limited and he even forgets to write in his diary. I support him with this at home by colour coding his books with his daily timetable and repeatedly talking about the daily tasks and lessons for the day as a reminder. Due to his exhaustion in the afternoons, he isn’t on a homework plan with only reading nightly.
His school have been amazing from the support officers to his teachers. They all work collaboratively with his school counselor to ensure they have met Jack’s needs. I can’t commend them enough and highly recommend Mt Maria College.
What do you feel would greatly improve epilepsy care currently in Queensland?
I feel communication through the hospital system should be improved when a child is diagnosed with epilepsy. They should be given a support booklet, actively telling the carer about Epilepsy Queensland and what support services they offer. This is one of the most valuable tools that shouldn’t be compromised on.
I also believe the NDIS should be recognising that epilepsy in most cases is a lifelong disability and should not be discriminated against, when it comes to funding for our children that require ongoing services.
Have there been any life-threatening incidents you would like to share?
Our biggest life-threatening event is when I found Jack unconscious, not breathing and at same time having massive tonic clonic seizures. In the early stage, we panicked and had no idea what to do. That’s why seizure first aid training is an essential and learning how to administer midazolam.
What has been your worst/best day?
Our best days are the days Jack safely wakes up, doesn’t have a tonic-clonic seizure, gets out of bed and gets to school for a whole day safely with no seizures or injuries.
What does the future hold?
The unpredictability of epilepsy can be one of the most debilitating mental challenges that not only the sufferers face, but the carer themselves. Therefore, it is difficult to know what the future holds. Our hopes and dreams for Jacks future is that he is accepted to be an active part of the community and not discriminated against when it comes to him entering into his working life.
Have you attended any events organised by Epilepsy Queensland?
We attended our first Purple day this year with our family. It’s so wonderful to participate in an event, which we can say is our day just for Jack and all the other people impacted by epilepsy. To get together and raise awareness is a great opportunity and raise money that goes to vital resources in supporting those who live with epilepsy and their families.
I also attended the Queensland Epilepsy Symposium last year for the first time. It was so valuable to learn from the medical Professors and neurologist themselves about various developments in epilepsy, therapies and devices. I was able to volunteer at this and it was great to be included.
Where do you currently volunteer & how long have you been volunteering there?
I started volunteering last September 2018 one day a week in the Epilepsy Queensland Woolloongabba office. This has been so rewarding on many levels. I thought what better way for me to learn more about epilepsy than to volunteer. I have been fortunate to help alongside some adults living with epilepsy. To have them share their stories and insights into their lives with epilepsy has been a type of education you just can’t buy. I respect them so much for how they live well with epilepsy.
My husband volunteers also by raising money for Epilepsy Queensland at his work, through having BBQs, selling raffle tickets for footy merchandise and dressing up and raising awareness for epilepsy. A little goes a long way and it also lays the foundation for our children to learn about giving back.
You’ve just started a parents group as well. Can you tell us why you think it’s important and how people can get involved?
Something I’m very passionate about is connection, or should I say making sure no one feels ‘disconnected’ living and raising children with epilepsy. I felt there was something missing when it comes to real contact in person. The internet and social media sites are great but there’s just one thing missing and that is face-to-face contact with carers on a similar journey. It is important to talk about what they are going through over a cuppa, a place to laugh, cry, not feel judged and to make real connections. To exchange practical learnings, ideas and ways of coping in a safe non-judgmental environment. That’s the driving force for me to start the catch-ups.
Where else have you worked, studied or volunteered in your life?
Volunteering has always been a part of my life. Over the years, I have volunteered at Blue care, Working Wonders (old Royal Children’s hospital) and many years feeding and clothing the homeless at Sandgate. I have started to volunteer on the P&F at Jack’s school since I gave up work to support Jack through his epilepsy.
Where would you most like to travel?
I would love to travel to the States for a white Christmas in New York for a real winter wonderland adventure!
What is your favourite book/author?
I like autobiographies and real life stories. One of my favorite ones is ‘Unmasked’ by Turia Pitt. She is a very inspirational, funny girl who teaches you sheer strength and helps you apply it to our life. Especially in our tough times as a mum of an E child to never give up.
Who is the most famous person you have ever met? Or who would you like to meet?
I’d love to meet Ellen DeGeneres. She’s hilarious, compassionate, generous and I love the way she moves and grooves. She’s very influential as well as a creative businesswoman. There never seems anything she can’t do and how great does she look for 60!
What genres of music do you like listening to/favourite song?
I love any music from Johnny cash to Sam Smith, Adele and Pink! I don’t have a favorite song. I just roll with it, but love a good 80s track like Culture Club and INXS.
Do you have any interesting hobbies you would like to tell us about?
I love to paint canvas. I’m an abstract and contemporary artist using acrylics. I also love to restore furniture, sew, renovate and cook curries. I love my/our tool shed and taught myself how to frame football jerseys.
I also learnt how to dance ballroom and cha-cha a few years back and would love to be able to do that again in the future.