Fundraising Focus: Kirsty’s story

Kirsty recently walked 10k every day in April and started the challenge after being just five weeks postpartum.

She raised a fantastic £2,630 for Epilepsy Scotland and shares why she decided to take on this challenge after her daughter Sylvie was diagnosed with epilepsy.


How did you feel when Sylvie was diagnosed with epilepsy?

When Sylvie was six days old, we went into the hospital as she was exhibiting abnormal movements. We were told that it was epilepsy when she was seven days old. I was devastated.

I was so worried about how this was going to impact her developmentally and even though she was only one week old, I couldn’t help but think of how this might affect her life as she grows up.

The anxiety you have as a parent to a newborn had ramped up and I was so overwhelmed with the diagnosis and the hormones from only being seven days postpartum.

As dramatic as it sounds, I worried that I wasn’t going to be a good enough mum to a baby who needed medication twice a day and would have seizures.

Luckily, my husband and mum were there to be the level-headed ones and after the initial shock helped me to put it into perspective.

The doctors, specifically Dr Findlay, at Crosshouse Hospital and the epilepsy nurse were amazing at answering all of my questions (some were probably ridiculous) and reassured me. As well as signposting me to places like Epilepsy Scotland for further information and support.


Did you know much about epilepsy before Sylvie was diagnosed?

I wouldn’t say that I was particularly well-read on epilepsy. I was naive in thinking that it involved the classic seizure that you see on TV and films and I knew to make sure someone having a seizure didn’t bang their head and was safe.

That’s where my knowledge began and ended. As a secondary school teacher, we are told of pupils in our classes who have epilepsy and what to do if a seizure occurs.

This has never been something that happened in my class and was something I always worried about happening.

Now, after Sylvie’s diagnosis, I am a lot more educated on epilepsy – what it means, how it can be so vastly different from person to person, different types of seizures etc.

This all down to a worried mum reading during the long night feeds!


Why did you decide to walk 10km a day to help raise money for Epilepsy Scotland?

I wanted to do something a bit different than 10,000 steps, so it would catch people’s attention.

I also knew it would be a huge challenge, but it was nowhere close to the challenges Sylvie had to face in her first week of life – numerous bloods taken, lumbar puncture, EEG, MRI scans.

She’s a trooper. To be honest, I think I underestimated how far 10km was and how hard it would be to do this every single day in April, but I found out quickly.

The walk on the first day and the pain on the second day just reiterated how hard it would be.


How did you find this challenge especially after just having a baby?

Beginning this challenge at five weeks postpartum was tough. When I had my son, I’m pretty sure I was still in the house all the time and taking it easy on the couch at that stage.

Not only that, but my little boy was only 20 months, so it was five weeks postpartum, with two under two, plates and pins in my ankle due to a bad break years ago and localised osteoporosis in that ankle.

I would often think “I should have just organised a bake sale”. But I’m glad I didn’t as I feel I achieved something and raised more money and awareness due to the challenge being tough for me and my situation!


What would you say to others who are looking to fundraise for Epilepsy Scotland?

Do it! Anything that you do or organise will help to raise money for an amazing charity that provides support for so many people with epilepsy and their families.

Support for when the diagnosis and times that follow feel like such a challenge. Although I don’t know if I recommend 10km a day – go for the bake sale!


What would you say to a parent whose child has been recently diagnosed with epilepsy too?

Ask questions. It doesn’t matter how stupid you think they sound. Ask them. I honestly felt that with every bit of knowledge or advice I was given my worries alleviated just that little bit more.

Only read about epilepsy on websites like Epilepsy Scotland or places signposted to you by your doctor.

There are horror stories on the internet and it can dramatise it hugely and not tell you that epilepsy is different for everyone. So, just get to know your child and what it looks like for them.


Is there anything you would like to add?

I just want to say that I wouldn’t have been able to complete this challenge without my husband and mum, who took the two under two hit a lot of the time on the days when walking with the double buggy felt like too much.

Also, so many friends and people who I haven’t seen in years reached out and offered to walk with me. There was rarely a day where I was walking by myself, it made it so much easier having the company.

And to everyone who donated, walked, shared our page, story and sent messages of support – thank you!