A man, woman and two children taking part in the Edinburgh Kiltwalk

#EpilepsyMatters: Being a parent of children living with epilepsy

Jennifer shares the challenges of being a parent of children living with epilepsy and why she decides to fundraise for Epilepsy Scotland.


How did you feel when your daughters were diagnosed with epilepsy?

I felt it was my fault they had it as I had it as a child, so I blamed myself. I was upset and thinking, why is history repeating itself?

Both girls have childhood epilepsy with focal seizures.

They also have a rare condition called electrical status epilepticus during slow wave sleep, which means they have an overactive brain at night when they are sleeping meaning their brain doesn’t switch off and it’s constantly overactive.

They are now on medication at night to help with this so they can get a better sleep.

What challenges have you faced as a parent of children who are living with epilepsy?

As a parent, I’m always worrying about them.

We’ve had a few tough times where they’ve been hospitalised with their seizures and been in ICU. But since I had childhood epilepsy and work with adults with disabilities who can take seizures, I take each day as it comes and never see anything as a challenge.


Have you received any support from Epilepsy Scotland? If so, how has it helped you?

Yes, I have received support from Epilepsy Scotland. Any questions I’ve had, they’ve been there to help and sent me T-shirts for when I fundraise for them, epilepsy books, epilepsy diaries, whatever I’ve needed. They’ve been there for me and my family.


Why did you decide to fundraise for Epilepsy Scotland?

I had childhood epilepsy and now my two daughters have epilepsy so I do it for my family and for others that have it.

I do the Edinburgh Kiltwalk each year to raise money for them. I’m a huge supporter for Epilepsy Scotland.


What would you say to anybody who was thinking of fundraising for Epilepsy Scotland?

To do it! They are so fantastic and very helpful and fundraising is a pleasure!


Is there anything you would like to add?

I would like to say I will forever be grateful to Epilepsy Scotland for their support each year, and it’s really much appreciated that they take time out to reply to myself and others.

I’m glad I reached out to them when my girls were diagnosed, and they have been fantastic throughout!

If you are thinking of taking on a challenge or organising a fundraiser for Epilepsy Scotland, we are here to support you every step of the way. Get in touch by emailing fundraising@epilepsyscotland.org.uk or call 0141 427 4911.