My Story

Thank you for visiting my page. I had no inclination of running a marathon, I once ran a half marathon in 2016 & said I am not running this far again! 

I ran for charity then & found that the motivation comes from the reasons why you are doing it, not just the challenge itself. 

In December 2019, my niece Polly came into the world. By March 2020, she was diagnosed with epilepsy & infantile spasms. Below is a few words from my sister, and I think you will see why I have been inspired to raise money for this much deserving charity.

Epilepsy. You would think that you learn hard and fast all there is to know about epilepsy when your baby is diagnosed with it. The reality of it is that no two cases are the same. I still cannot quite comprehend the magnitude of the word - epilepsy, or accept that my perfect little girl is blighted with it - even now almost 3 years into our journey. I am beyond devastated that she will suffer with it and its catastrophic consequences for the rest of her life. I don’t think I will ever fully accept it, nor will I ever get over it.

Our daughter, Polly, is 3 years old. She has focal onset epilepsy with complex needs and global developmental delay. She is, without doubt, the bravest little girl we know. Polly started having seizures when she was just 12 weeks old. Up until then she was our cute, podgy faced, happy little bundle of joy, our ‘go anywhere baby.’ I noticed her have a couple of vacant episodes when she was feeding. I knew in my heart it was bad and that our life as we thought it was going to be was changed forever.

Since then she has been through more than you can imagine, many hundreds of seizures, multiple anti convulsant medications with all their horrendous side effects, pumped full of steroids on numerous occasions, hospital stays, EEGs,  scans, bloods, full brain surgery in June 2021 which was beyond harrowing and most recently, she has started the ketogenic diet - a very strict prescription diet in an attempt to get some sort of seizure control. Polly’s seizures generally, but not always come at night, from sleep. They never get any easier to witness. They consume and contort her entire little body, they are prolonged, silent and each one is quite literally potentially deadly. We put Polly to bed each night knowing that given her seizure type and the fact her seizures happen from sleep, she is at greater risk of SUDEP - Sudden Unexplained Death in Epilepsy.

The Daisy Garland. The first people/charity who heard us. Desperate, out of fear we would miss a seizure we stumbled across The Daisy Garland, seeking additional ways to monitor Polly overnight, something that would alert us to a seizure. The Daisy Garland have funded us a SATs monitor which will alarm if it detects a change in Polly’s heart rate and oxygen levels. Her heart rate increases and her oxygen levels drop hugely during a seizure. It acts like an extra pair of eyes through the night. SATs monitors come at great expense and we are very fortunate to have been granted one.

There are 18,000 children living in the UK suffering with drug-resistant epilepsy. I know, from bitter experience it is a frightening, unpredictable, and very lonely place to be. The small hours of the night are long and the worry is exhausting. Anything that helps alleviate that worry, such as the SATs monitor means more than I could ever explain.
www.thedaisygarland.org.uk