2023 World Epilepsy Day / Purple Day: Embrace Sharing Embrace Awareness

Since 2019, AYS and the Epilepsy Foundation have worked together to plan an annual workshop on epilepsy education and training for our participants, their families, and our staff members in an effort to raise awareness of epilepsy.

Epilepsy is caused by a temporary electrical disruption in the brain, which can lead to various seizure types. It can be a scary condition for those who don’t understand what’s happening, which has led to many unnecessary assumptions.

This year, we had the chance to speak with Jack Vernimmen, one of our participants, and his mother Shirley Vernimmen, who is aware of how crucial it is for everyone to be aware of epilepsy.

“Every year after the training, there are always comments on what we have learned that we didn’t know before, and you can now hear about them at the workshop. I have learned just how much it does help me.”

Jack, a 19-year-old with epilepsy, was diagnosed in 2014. He was in grade five when he encountered an absence seizure for the first time. In the following year, he began to experience a tonic-clonic seizure, which required two to three different medications. His quality of life and learning at school were severely affected as a result.

The good news is that epilepsy can be managed with the appropriate diagnosis and medication. Now that Jack is recovering, his seizures have significantly decreased from occurring four times per month to several months without one. He is currently looking for work, completing his TAFE certificate, and, most importantly for Jack, getting his driver’s license.

“With the help of AYS, Jack is now learning to drive with a company called I Drive Safely,” Shirley says.

An AYS Peer Mentor aims to build meaningful and respectful social connections with our participants and their families. Shirley considers the AYS Peer Mentor service to have made a significant, positive impact on Jack and she is very pleased with it.

“When he was younger, having seizures meant missing school for the day. But now, even if he had a seizure, he would say don’t cancel my Peer Mentor session. I’m still going to do it.”

“Tuesday and Friday are Jack’s favourite days, particularly on Friday when he can meet up with a group of four since his peer mentor has scheduled a meeting with another peer mentor and his participant,” Shirley says.

In order to help participants and carers who are unsure of how the AYS Peer Mentor program may help them, we asked Jack and Shirley to offer some advice before we ended our conversation. Here’s what they had to say about us.  

“If you don’t have a job, they can help you with that. They are incredibly friendly and knowledgeable.” Jack says.

“AYS team has made it easier for us to understand what Jack is eligible for in terms of NDIS funding. They opened up the world for Jack” Shirley says

At AYS, we are passionate about assisting our participants to achieve their goals. We agree with Shirley that Jack will succeed in his endeavours due to the fact that he has never let his epilepsy stand in his way. Well done, Jack.

Image from epilepsy.org.au

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