Submitted by Carol Ireland
It’s that time of year again, festive season is almost upon us and we say farewell to 2021. It has again been another year of challenges for many, a new chapter in our pandemic lives, but there is hope for a Christmas that allows us to be with our nearest and dearest once more.
Below is our latest fundraising appeal and it features a beautiful family and I hope as you read this you can consider a special gift at this special time of year so that Epilepsy Action Australia can be there for the children and families living with the daily challenges of epilepsy.
Arlo is 5 years old. He loves Batman, his big brother Harry, and his Mum and Dad. Arlo also has epilepsy. His first seizures, when he was only 3, started a very scary chapter for his family. But Epilepsy Action Australia has been there for Arlo and his family ever since with guidance and support, and we can only do this because you’ve been there for us! Your generous support is a truly special gift for Arlo and many others with epilepsy.
Arlo’s epilepsy caused a dreadful shock for his family. His mum, Shannon fights back tears when she describes that first time she found him on the floor, lying so still, and not seeming to be breathing. She was utterly terrified. The trip to hospital only provided the bare minimum of answers, and they went home feeling extremely worried. They had been told at the hospital that Arlo really wasn’t breathing during his seizures, and their most horrible fear was losing him.
Living with epilepsy can be tough for children like Arlo. But it is part of their everyday lives. Together, we can help these kids be brave and get through it, by also being part of their lives. Our goal at Epilepsy Action is to be there, making the journey a little easier, but we can only do it thanks to generous people like you.
This Christmas a gift from you can help us continue to support many children and adults with epilepsy who need us so much.
With Arlo’s complex condition, his family needs a lot of information and support from Epilepsy Action.
There are important ways we’ve helped. Thanks to generous donations from people like you in the community, we’ve been able to make sure Arlo and his family have the support of one of our specialist Epilepsy Nurses.
Shannon says she’d be lost without Tina, our Epilepsy Nurse Consultant, who has been a lifeline – informing and guiding the family through each step as they’ve worked to restore some normality to their lives. On the back of the donation form I’ve enclosed, Shannon shares what Tina’s help has meant to her family, amid the daily uncertainty they face.
Another unique way we could support Arlo was to give him his own very special friend to cuddle.
When the package from Epilepsy Action arrived at Arlo’s door, it was a delightful surprise. Inside was his own soft brown Ted-E-Bear, to be there for Arlo through the difficult times, especially when he is in hospital. Just like Arlo, Teddy has even had his head bandaged for an EEG (an electroencephalogram, a test that detects electrical activity in the brain with small, metal discs attached to the scalp), showing Arlo what was about to happen and helping him stay calm.
You have made this Ted-E-Bear Program possible. Giving children with epilepsy and their siblings these beautiful bears, who come with their own adoption certificates and an information pack for the family. It’s a much-loved program among the services we offer, and great comfort to hundreds of children every year.
His bear is always with Arlo, comforting him on his scariest days.
These are presents that mean the world. As this challenging year comes to an end, no-one really knows what our Christmas or holiday season will be like in Australia, but we all have a deeper understanding of what it’s like to feel afraid and unsure of what tomorrow will bring.
But one thing is certain, you can make this Christmas happier for kids who do it tough by giving a donation today. I hope you can give generously. With your gift, we will ‘be present’ for Arlo and others with epilepsy at Christmas and into the new year, providing care and support in their most challenging times.
Wishing you and your loved ones a safe and happy festive season.
CEO and Managing Director