We exist to improve the lives
of everyone affected by epilepsy

Purple Day - helping children live better with epilepsy

8 Feb 2019

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 vital work helps children learn about epilepsy, lets them know they’re not alone and gives 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.

 

For more articles like this, become a member of Epilepsy Action to receive Epilepsy Today magazine four times a year!

 

You may also be interested in...

Busting myths, spreading information and building confidence: casting the spotlight on the Epilepsy Action Helpline for Purple Day

It’s not a surprise that if you have never come across a particular medical condition, you are unlikely to know much about it. Particularly if it’s a rare one. It’s actually quite logical really.

There are no comments yet. Be the first to comment...

Question about your epilepsy?

Your question will be sent to our helpline advisors.

Have a comment about this page?

All comments are reviewed by a moderator before publishing. Comments will be edited or deleted if they are offensive, libellous, slanderous, abusive, commercial or irrelevant.

We ask for your email when you make a comment through this website. This means that we can let you know directly that we have replied to you. By making a comment through the website, you allow us to use the comment in our publicity without using your name. If we would like to use your name, we will email you to get your permission.

The content of this field is kept private and will not be shown publicly.
CAPTCHA
This question is for testing whether you are a human visitor and to prevent automated spam submissions.