What does safety mean to you?

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Submitted by Carol Ireland

Imagine a seizure coming at any time, without warning…

If you think of the different situations where someone could have a seizure, it’s easy to understand why there is a heightened risk
of accident and injury for people with epilepsy. Unfortunately, for people with epilepsy, their risk of harm can increase just by doing ordinary things like making a cup of tea, cooking a meal, catching a train, or having a bath. There is risk of burns, drowning, falls, and other injuries. Simply going to sleep at night can be perilous, as it is for Kobe.

Read Kobe’s story in our latest appeal below and if you can please make a tax deductible donation to Epilepsy Action Australia so we can help children like Kobe stay safer with specialised epilepsy training, equipment and guidance.

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‘Safety’ is a hot topic in today’s news. We all talk about it, and it makes me ponder what safety means to me. What does it mean to you? We all want to protect ourselves and our loved ones from danger. By supporting Epilepsy Action Australia, you help protect families living with epilepsy. For them, safety can be a complicated challenge.

Sarah is one mum who is constantly alert to danger for her family. She knows her son Kobe’s life depends on her vigilance.

Kobe was four and a half months old when Sarah first noticed his little fist shaking. A few nights later, she laid her hand on him as he slept and discovered his whole body was shaking. For 17 minutes the shaking continued, and Sarah called an ambulance, completely terrified. “I honestly thought we were going to lose him,” remembers Sarah. “Seeing an ambulance officer pick up your baby who is floppy and lifeless and just dribbling everywhere – I don’t think I’ll ever forget that.”

Over the next six months Kobe had many more seizures, hospital visits and medical appointments. The results of genetic tests only added to his parents’ fears. “We were gobsmacked and just speechless when the neurologist told us Kobe had Dravet Syndrome,” Sarah remembers. “She said that 20% of kids with Dravet Syndrome don’t make it out of adolescence, they pass away, due to complications from seizures. There’s also an 80% chance of them having a developmental delay.”

“We’re trying to minimise the risks for Kobe so he can develop as best he can. He’s doing alright at the moment. But one seizure could change that. You’re sometimes going crazy with worry.”

Can you imagine fearing your child is in danger when you tuck them into their own bed at nights?

Unfortunately, night times are dangerous for Kobe. He can have life-threatening seizures in his sleep. And hypervigilance is needed, even at night, in case someone needs to give Kobe his emergency medicines. As you would expect, the situation is incredibly tough for his parents.

To manage the anxiety and understand how to keep their children safe, families like Kobe’s need our help. Please can you give today to Epilepsy Action, so families have this support they urgently need?

It was our specialist Epilepsy Nurse, Tina who provided Sarah with advice and guidance on practical strategies and equipment she needed
to minimise risk for Kobe, particularly at night.

So that Sarah can get some sleep herself, she relies on equipment and devices to monitor Kobe. He has a special camera in his room and a seizure ‘mat’ on his mattress. Both sound an alarm if they pick up any unusual movements. He also wears a smart sock to bed that alerts his parents to changes in his body temperature or heart rate that come with seizures.

Sadly, many epilepsy-related deaths often occur in bed during the night. So, for many families, sleep monitors are an essential part of a risk reduction plan. With your generous donation, our Epilepsy Action Australia Nurses can continue to research, evaluate, and source devices like these.

Sometimes keeping people safe is about the specialised training we provide. Let me explain. Occasionally, people with epilepsy have seizures that are longer than normal or cluster seizures (where seizures occur one after the other without recovery in between). This can lead to very long seizures like Kobe’s, called status epilepticus.

These seizures are considered medical emergencies and urgent treatment is required to stop them. Our specialist epilepsy nurses provide training to families, carers, and teachers so they know how to administer life-saving emergency medicines.

Sometimes safety comes from a Seizure Management Plan. Our Epilepsy Nurse prepared one for Kobe’s family, outlining how to help him if he’s having a seizure. Regular updates ensure everyone who cares for him knows about the assistance he needs.

Safety is priceless. It’s the key to living a life of independence and confidence. And it is up to you and me to help put safety first. If we don’t, the cost may be a life, perhaps the precious life of a child. I’m asking you to help by giving a tax-deductible donation to Epilepsy Action Australia now.

With your generosity, we can make sure people with epilepsy have the best opportunity for staying safe. With your support, people can reduce their seizure related risks.

There are many issues to address in the world of epilepsy, but we need to put safety first. Life will never be risk-free but by taking positive action today you can really help.

With thanks,

Carol Ireland
CEO & Managing Director

P.S. Children like Kobe deserve to feel safe especially in their own beds, and their parents desperately need
some peace of mind. Please help us make this happen today.

You can read more stories like Kobe’s, about the importance of safety for people living with epilepsy, click the image to read more. 

There are many seizure safety products on the market, we list some of them on our Shop here.

Epilepsy Action Australia wants to provide you with some simple ‘keep safe’ products including: a pocket sized seizure diary, a medical ID card or a Medical Alert bracelet (in either pink or black), simply reach out to us on email here: [email protected] to get yours.

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