Submitted by Carol Ireland
I’m sure I’m not alone in being grateful that the year that was 2020 is finally over. It was a difficult year for all, and my thoughts are with those who have been directly impacted by the pandemic. The hope that a new year brings is even more important at this time, and that is why we are focusing on some positive stories that your valuable contributions help to achieve. In our latest fundraising appeal below meet the inspirational young lady – Amy and her lovely family. You can also meet some other young people with lots of hope and bright futures who have some exciting plans for 2021 and beyond in our Newsletter below, as well as read more about Purple Day plans, our Million Dollar Teddy and our latest Adventure – Hike for Epilepsy – Larapinta 2021.
I hope you enjoy these positive stories and if you can please give generously.
Yes, it’s a ‘new year’. We send you our warmest thanks and very best wishes, hoping it will be better than the last. I do want to acknowledge the life-changing difference that YOU make to people with epilepsy. Your generosity improves the future for many in need. The word ‘future’ can seem like something far off and not entirely real. But together, we can change lives. This is Amy’s story.
Amy was a bright and bubbly six-year-old when things started going downhill. Her parents Cathie and Paul were baffled at first, and so were her teachers at school. They wondered if Amy wasn’t just a ‘dreamy kid’, or as Cathie puts it: “away with the fairies.”
But sadly, with each strange episode Amy experienced it became clear this was much more serious. Mid-sentence, while chatting happily, Amy would suddenly stop and have no idea where she was or what she’d been doing. She became so upset by her ‘turns’ that she was always in tears.
As you can imagine, Cathie and Paul were utterly heartbroken and helpless as test after test showed nothing. Finally, after 18 months of worry and uncertainty, an EEG test gave them a name for Amy’s condition. Absence seizures. Epilepsy.
Without medication Amy was having up to 60 seizures in one day. It was like someone was always putting her ‘on pause’. During these times, she wouldn’t be conscious of anything around her. Imagine how disorienting and confusing these gaps and jumps in reality would be!
But after Amy’s diagnosis, it seemed all might be okay. She was prescribed medication and for a while her grateful parents had their happy little girl back. But sadly their joy and relief didn’t last. Cathie remembers Amy struggling with increasingly distressing side-effects, the worst of which was extreme depression.
“She’d say things like ‘Mummy, why am I like this? I hate being me’. Hearing that from your 7-year-old was just heartbreaking.”
Around that time Cathie phoned Epilepsy Action Australia, desperate for help. Cathie says she’ll be forever thankful for the practical, reassuring advice and support that was made possible – and it’s something Cathie believes set their lives on a new path.
A year after Amy first met one of our Epilepsy Nurses, Tina, she was already a different girl. Some time later, at one of Epilepsy Action’s peer camps, Tina was thrilled when Amy bounded up with a huge smile on her face. And when Tina asked her how school was, Amy replied ‘Awesome!’
Since we first met Amy she has gone from strength to strength. Her parents are both so proud of the young woman she is today. At 17, she is strong, determined and capable.
For Amy herself, the memories of when she was first diagnosed with epilepsy are now hazy. Her main recollection from those tough days is feeling frustrated, sad and lost. Not being able to keep up with others her age at school left her unhappy and embarrassed. But by high school, things were clicking into place.
“As soon as I started improving in my schoolwork, that gave me motivation, so I then wanted to push to improve even more,” Amy says. “That for me felt really good.”
Incredibly, Amy has now been seizure free for nearly four years. She recently achieved a milestone all teenagers dream when she gained her learner driver’s permit. Just starting on her final year of school, her goals are getting the best marks she can, learning to drive a manual car, and becoming a piano tuner one day. She plays the piano beautifully and composes her own classical music. Thinking about her next steps, she’s excited and optimistic.
“You never know where the road ahead is going to take you and you’ve got to hang in there to find out,” she says. “What will be the exciting things that are going to happen? You want to get to those exciting moments.”
You have helped make this possible. A new year is for fresh starts and new hope, and this is what you give by donating to Epilepsy Action Australia. During the rough stages, families need all their courage to get through the day, but their resilience and resolve is inspiring. They deserve our help so please continue your support for them into 2021. Their future can be different because of your kindness today.
Your gift now can help change the path of a young person like Amy and strengthen them and their families for whatever lies ahead. Thank you for being part of their journeys and I encourage you to do so again by giving generously.
CEO & Managing Director
Read our Taking Action Newsletter by clicking the image below.