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Nobody feels the pain of a child’s struggles more than their parents. For Eva’s and Andie’s mum and dad, that feeling is multiplied by two. Both of their beautiful girls have epilepsy.
“There’s endless worry, sleepless nights, hospital visits and strict medicine regimes,” says their mother, Maja. “It has also made us strong and determined to have normal family experiences.”
Andie, the youngest, has inherited that determination, in spite of the fact that only 10 minutes after she was born, she started having seizures. You can imagine how hard that was for the loving parents who had only just welcomed her into the world.
Doctors discovered Andie had disorder of her brain and it hadn’t fully formed. If she survived at all, they expected that her disabilities – including epilepsy – would be significant. Instead, against the odds, Andie is not just walking and talking, she has grown into a lively, curious, chatty and happy six-year-old.
Andie still has seizures while she sleeps. So nights are times of constant vigilance – not rest – for her parents.
Then in 2014 a sudden change disrupted nights for Andie’s big sister too. Says Maja:
“Eva would wake up just screaming and you couldn’t touch her, you couldn’t console her. I also noticed she was having learning difficulties at school. I asked to have an EEG done on her … and it came back showing she also had epilepsy.”
As you would guess, every day for this family is affected by epilepsy. So this time of year can be particularly nerve-wracking – when the girls go back to school, and into the care of other people who don’t know their needs like their parents do.
Your donation today would help us offer them support, including for their return to school. Andie has special learning needs. Meanwhile Eva needs extra support with learning, and mixing with other children. Also she sometimes requires emergency medicine, which can only be given by an adult who knows exactly what to do.
The fact their needs at school weren’t being met was what first led their mum to contact Epilepsy Action Australia.
“I was moving my children to a new school and I wanted a comprehensive action plan for the teachers,” says Maja. “I did Epilepsy Action’s online planning program to create a Seizure Management Plan. Then I rang them and the Epilepsy Nurses checked it all for me and made sure it was how it should be. They also have done training for the staff which included showing them how to give Andie her emergency medication.”
“We’d had a lot of issues at school. Eva was having high anxiety at school and a lot of struggle. She still has her days, but now her teachers know how to deal with the situations.”
“They also have special plans in place for hot days, which is when the girls are more likely to have seizures, and a teacher follows them with a walkie-talkie at all times, so as soon as they notice anything out of the ordinary, it can be dealt with. We finally feel confident when we send the girls to school. It’s a great feeling and a huge relief.”
There are thousands of other children and families across Australia who need us right now. Please do give today so we can ‘backstop’ as many of them as we can … and in particular, support those families whose children with epilepsy are going back to school. Your generosity can change this anxious experience into a positive one that will set children up for the very best learning opportunities and more fulfilling lives.
It is estimated that around 800,000 people in Australia will be diagnosed with epilepsy at some stage in life. As the national service provider of epilepsy education and support services, meeting their needs is our primary aim.
Donations of $2 or more are tax deductible. Click here to make a donation today and help make a positive difference in the lives of children and adults impacted by epilepsy.
An easy and convenient way of donating to Epilepsy Action Australia is by becoming an Action Partner and making regular monthly donations.
How our Action Partner program works?
- Your nominated donation amount is automatically deducted from your credit card/ bank account each month.
- Your regular support enables Epilepsy Action Australia to plan all our projects with greater confidence and accuracy.
- We keep you informed on how we’re spending your donation and the difference it is making.
- We send you an annual statement that you can use to help with your tax return, as all donations are tax deductible.
This reliable regular source of income enables Epilepsy Action Australia to make a positive difference in the lives of children and adults affected by epilepsy.
Here are some of the ways your monthly gift could help:
- $25 - Comprehensive information packs helping parents understand their child’s condition
- $50 - Telephone support, advice and guidance
- $100 - Community education session teaching people how to help someone having a seizure
Becoming an Action Partner is quick and easy.