Finding out you have epilepsy is scary at any age. For young children and their families, it can be terrifying.
For Purple Day 2019 Epilepsy Action is aiming to help more children and families come to terms with epilepsy.
Purple Day is an international event held on 26 March every year to raise awareness and funds to help people living with epilepsy.
All the money raised by Epilepsy Action supporters for Purple Day this year will go towards services for young children and their families. This includes getting specially-designed ‘Just for Kids’ packs to more nurses so they can explain epilepsy to children in a way they understand. All the vital work this Purple Day will aim to help children learn about epilepsy, let them know they’re not alone and give them the confidence to deal with their diagnosis.
One such child is Harriette (left), whose mum Suzanne recently told Epilepsy Action about how the pack had helped her daughter.
“We hadn’t had epilepsy in the family before and it had never been something I was aware of.
“Harriette used to find it really hard to explain what was going on for her. But the ‘Just for Kids’ pack really helped her understand what was happening. Harriette’s school has been brilliant too. The staff have been on training so that they can support her in any way they can.”
The money raised on Purple Day will also help to grow Epilepsy Action’s UK-wide network of local support groups. That means more parents and carers can find support locally and feel less alone as they try to help their children live better with epilepsy. Steph, whose young son has epilepsy, explained how important the groups have been for her.
“I’m the mother of a little boy aged two who has had epilepsy since he was 10 months old.
“I hadn’t been able to talk about my son’s epilepsy with anyone other than my husband. And when I did, people didn’t understand or I got too emotional to speak. A friend of a friend told me about the coffee and chat group.
“Just being able to talk about my situation was invaluable. It helped just knowing I could express myself and talk to others about my concerns and worries and have a cry without being judged. The others understood. They had experience and could empathise and advise me.
“I spoke with the group organiser and she enabled me to talk to the right agencies and got the ball rolling for me. Within a week, I got a special mat and alarm supplied for my son’s bed. This alerts us if he has a seizure in bed. It’s vital – with him being so tiny there’s not much noise to wake us at night when he has a seizure.
“We’re all mums at the coffee and chat group. I’m the youngest but I don’t feel any different. If anything, I feel I benefit more as I can draw upon the experience of the others and how they managed at different stages of their child’s development. We just all happen to be mums of children with epilepsy, and it’s really worked out well.
“The group has changed my life, honestly, it really has! It’s therapeutic and I couldn’t be without that support now.”
Every penny Epilepsy Action raises for Purple Day 2019 will mean more support for more children just like Harriette and parents like Steph. There are many ways you can get involved and help make a difference.
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