The Fight of Our Lives!

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Submitted by Carol Ireland

Will you join our fight to keep Epilepsy Nurses on the Frontline?

Epilepsy Action Australia is fighting to keep our essential services operating during this current health crisis and WE NEED YOU!

The past few weeks and coming months are anxious and scary times for our community. I don’t think there is a single person untouched by this pandemic and now, during this challenging time, people with epilepsy need Epilepsy Action Australia’s help more than ever.

I implore you to read our latest and most critical fundraising campaign below and please consider an URGENT donation at this time, together we can make a difference.

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“When it’s so easy to dwell on fear, loneliness and ‘what ifs’, Epilepsy Action Nurses are a lifeline,” says Natalie, whose daughter Alexis has epilepsy. “We need them desperately.”

Through the anxious weeks and months ahead, please will you help us make sure that no-one who calls on our Epilepsy Nurses goes without their vital support?

Dear Supporter,

I realise it’s a trying time for all, so thank you for reading this. COVID-19 is on all our minds. But your past support for Epilepsy Action Australia shows you also care deeply about people with epilepsy.

When epilepsy affects someone we love, it’s hard. Now, during this pandemic, people with epilepsy need help more than ever. It’s crucial that our Epilepsy Nurses are on hand to provide trustworthy advice and guidance to families in need. But we can only continue our service if we have your support.

Unfortunately, COVID-19 has forced the cancellation of our Purple Day fundraising events and our income is falling short of target. Right now, we are almost entirely dependent on support from people like you to keep our nurses in the field, delivering critical care and support. In these hard times, your tax-deductible donation by 30 June will help us continue to assist those who rely on us so much.

Please will you consider an urgent gift towards keeping our Nurses at the frontline, so the current crisis won’t disrupt their critical help to children like Alexis and their families?

“Everyone is feeling isolated at the moment, but for us it’s not really a change,” says Alexis’ mum Natalie. “We always feel very isolated. That’s why we rely on Epilepsy Action Nurses.”

When Natalie first reached out to us, she was feeling grief-stricken and lost. Her little girl, who was then only a year old, had just had a seizure that lasted eight and a half hours straight. As Alexis lay at death’s door in intensive care, her shattered mum, and dad George had prepared themselves to say goodbye to her. Amazingly, she survived against the odds. But the family’s toughest battles were just beginning.

“Everything stopped after that seizure,’ says Natalie. “Alexis was starting to crawl and sit but that day she stopped developing. She has just begun pulling herself up to stand and she is six years old.”

Soon after Alexis’s near-death experience, her family was also told she has Dravet syndrome, one of the most devastating forms of epilepsy. Now any ordinary day can bring a new emergency when Alexis has seizures that could take her life. Natalie calls the diagnosis “catastrophic”.

“You go through the stages of grief because it’s not how it’s meant to be,” says Natalie. “A child shouldn’t have to go through that, it’s not fair.”

“I felt completely lost after the diagnosis and that’s when I phoned Epilepsy Action for help. I was lucky enough to have one of their Epilepsy Nurses, Tina, answer my call. This is when I broke down. But Tina helped me hold onto hope.”

Natalie says Tina’s constant support is a lifeline she couldn’t do without. Many others also rely on our Epilepsy Nurses. They need us even more, as this coronavirus emergency causes extra challenges for people with epilepsy. With your special donation today, we can continue the work of our supportive and caring nurses.

Our Nurses provide essential services, including training in emergency medication for parents, schools and health professionals which can save the life of a child like Alexis. They offer emotional and practical support to families and their guidance helps people cope better with epilepsy and manage their seizures. 

“This is an isolating journey, whether it’s a catastrophic syndrome like ours, or other forms of epilepsy,” says Natalie. “It’s easy to feel alone and unsupported. To have someone that you know understands and cares and can answer your questions, who gives reassurance – it’s everything.”

“It’s a relief that when everything’s gone topsy-turvy in the world, some things are still concrete. We can still rely on Epilepsy Action.”

Your past support of Epilepsy Action Australia has made a real difference to many, like Alexis and her family. They are incredibly thankful for your help. But thousands more need us. As you read this, our phones are ringing with requests for urgent support and we are fighting to keep our essential services operating. Our nurses are working longer hours to cope with the case load.

Please consider making a tax-deductible donation today to help keep our Epilepsy Nurses, like Tina, in the field, so that together we can change lives at this difficult time.

I know that times are tough for many right now, but if you can give whatever you can, I’d be so grateful.

Yours sincerely,

Carol Ireland
CEO & Managing Director

P.S. At this time, when people need us the most, event cancellations have reduced our funding. I hope you’ll consider helping us keep our Nurse team operating, for the sake of children like Alexis.

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