A story from the heart

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Submitted by Carol Ireland

As we edge closer and closer to the festive season and the end of 2020, I think there is much hope that Australia may be past the worst of what this year has had to offer. No doubt it has been difficult, and still is for many but there is a sense that Christmas will be celebrated with friends and family and a consensus that we will all be a little relieved to bring in a new year. But did you know that seizures don’t stop at Christmas, they don’t stop for pandemics, they don’t stop for first days at school, for family holidays, for weddings or birthdays … for anything really, but that doesn’t stop amazing children and families from living life to the fullest every day.

Below is our latest fundraising appeal and it features one of those inspirational families and I hope as you read this you can consider a gift from the heart at this special time of year. You can also view part of Alex’s story via the video below. Thank you for supporting Epilepsy Action.

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I want to share a story that touched my heart. It will also reaffirm for you just why you support Epilepsy Action Australia. Over the years you’ve received other letters from me, but this one will ask you to do something different to reach out to children with epilepsy.

During my time with Epilepsy Action Australia I’ve met many families living with epilepsy. I’ve seen first-hand their distress, their fear and anguish. I’ve also seen their courage and resilience!

Last year I met a special man and his family. Alex Wadelton is a creative director and writer with a beautiful family – wife Sheridan and their two children, Roarke, 11, and Lila, 7. Epilepsy has had an unforgettable impact on their lives.

Two years ago, the family planned to have dinner at their favourite restaurant. Alex, Roarke and Lila arrived and waited for Sheridan, who was coming from work.

They were having a pleasant time when mid-conversation little Lila, whose hands had been animated in chatter, “froze”. Alex asked if she was OK, but she didn’t answer. She then fell back off her chair and started shaking. Alex didn’t know what to do. He thought perhaps she had choked on something so he tried to open her mouth. But it was clenched shut. Afterwards she lay in his arms, completely limp. You can imagine the shock and confusion Alex felt.

As restaurant staff called an ambulance, Alex could now see Lila was breathing. But she was unresponsive. “It seemed to go on and on forever,” he said. “I had no idea what was happening.” When Sheridan arrived, she cuddled Lila up in her arms. Roarke was crying in the corner.

Sheridan went in the ambulance with Lila, who had another seizure on the way to Royal Children’s Hospital. After organising Roarke’s grandparents to look after him, Alex drove to the hospital, crying the entire way. He’d had no phone contact for hours as Sheridan’s phone was out of power, and thought “I’ve just seen my daughter die.”

But when Alex arrived at the hospital Lila was awake! She didn’t recognise him and couldn’t talk, but had said her first word, “Mumma”, around 4am. Doctors said it may have been a seizure. But Sheridan, Alex and Lila had to go home with no clear answers.

Only much later did Alex and Sheridan understand Lila had suffered a tonic clonic seizure. (They begin with loss of
consciousness; the body stiffens, and muscle jerking follows.)

In the days to come, Lila also started making unusual sounds that seemed to be a cross between a sigh and a hiccup. Then she had
another seizure at school. She told her friend she wanted to have “a little lie down”, but she was found in the toilet with bruising on
her face. Lila had seven or eight more seizures over the next few months. She also made those unusual sounds again, sometimes
up to forty times a day. Tests showed that along with tonic clonic seizures, these sounds were Lila having absence seizures. These
affect awareness. A person will suddenly stop all activity and may appear to be staring into space.

Lila was diagnosed with epilepsy and prescribed medication. Unfortunately, in the current COVID environment, online lessons are a challenge. Alex says they “send her right back into her seizure state, right on the edge.”

In this season of giving, please help us again with a tax-deductible gift to continue our essential services for children like Lila.

Lila is an amazing little girl. For now, she can’t climb or water ski, which she loves, but she is full of life. She draws pictures of rainbows and love-hearts all the time.

You see, the great news is that resilience can be nurtured in all children. We can’t take away their challenges, but we can help them bounce back from stress, challenges and trauma. They are capable of extraordinary things, each in their own special way.

That’s why this holiday season I’m asking you to do something extra special. With your donation, can you please send a message of encouragement or inspiration to children with epilepsy? A message from the heart is one of the most profound and easiest things you can do for these kids to give them strength.

We will collate the messages we receive to share with children on our website and through special groups, like our special Facebook page for families.

Epilepsy Action exists because of families like the Wadelton family. It’s why I do what I do. I know it’s why you support us. I hope you will help now too, seeing how much children need you.

My heartfelt thanks and warmest wishes for the holiday season,

Carol Ireland
CEO & Managing Director


 

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