When you choose to donate, you’ll be giving a family, like Heath’s and Luisa’s the complete and comprehensive care they’ll need from the Epilepsy Foundation.
We talk with parents about how best to support their child during a seizure, help them navigate the school system and give them tools, like a detailed Epilepsy Management Plan or Emergency Medication Plan so they can keep their child safe during a seizure.
While we provide most support by phone, we also attend appointments with a worried parent or carer. We listen, we share our understanding and develop a plan of action. We brainstorm on strategies to reduce risks or stresses. And we learn as much as we can about the person, including their life goals, hopes, support network, so they have the most appropriate support.
We work with foster parents or kinship carers, with people who don't speak English along with their interpreters. We work with people who have multiple services involved in their care.
If you are living or impacted by epilepsy,
we are here for YOU.
If you can help, please donate now.
When Roman was 6 months old we noticed something very strange. It looked like he was stargazing, stunned and had watering eyes. Our GP said there was nothing to be concerned about as there were no other signs or symptoms at the time. And that was it.
Until…
It was unbearable seeing our son hooked up to machines and instruments. All the scans, blood tests, reviews, discussions with doctors and specialists…
Then a week later we were told, our son has Infantile Spasms. We had no understanding about seizures or spasms.
We didn’t even know the words ‘Infantile Spasms’.
The seizures would last between 30 seconds to a couple of minutes. Watching our son having a seizure and knowing all we can do is film it to show a doctor or even pray it won’t happen again was excruciating. Our happy, cheeky boy was now cranky, unhappy and sullen.
We were terrified.
We were in pain.
We felt weak.
The Covid lockdowns further compounded our pain.
We felt isolated and alone. Only one parent was allowed to be with Roman in hospital.
One of us would just sit in the car waiting… waiting… waiting for a word of how our little boy was going.
It was unbearable.
As we were trying to understand Roman’s epilepsy, we started to wonder will our son have to deal with stigma as he’s growing up!
Will he be accepted or pushed aside?
Will he be uninvited from parties just because he has epilepsy?
What would happen to our little boy?
We hope you can show your support for families living with epilepsy. You’ll be giving them the chance to take care of themselves, ease the stresses and anxiety they may be experiencing and receive the very best care this organisation can provide.
1800 437 453 or (03) 8809 0655
donations@epilepsyfoundation.org.au
