Janis Neil’s 20K Walk in memory of Morag and Fiona
My husband and I have been married for 41 years and have recently retired. We each have one brother, they are both married and both had one son and one daughter. Both of our nieces developed epilepsy as children, a strange coincidence, we always thought.
In November 1994, my husband’s niece Morag died aged 20, following a seizure in her sleep. She had only moved from her home in Irvine to study at Aberdeen University a couple of months earlier. Of course we didn’t know about SUDEP at that time, we just thought that this was a tragic and unusual accident.
My brother and sister-in-law were obviously even more protective of their daughter Fiona following Morag’s death, but none of us could believe it when Fiona died in her sleep in March 2011, aged 37. By that time I had heard of SUDEP and since Fiona’s death have kept in touch with the SUDEP Action charity, keen to learn of new developments.
I heard about the 20k challenge through SUDEP Action’s email newsletter. It struck me that here was something I could do in memory of Morag and Fiona and raise money to help fund the WADD Project. If such a device had been available over the last 20 years, perhaps Morag and Fiona might still be here... I thought about doing an A to B walk starting at my home, but we live in quite a hilly area so that didn’t appeal! The beauty of Stewartfield Loch is that I needed to do 16 laps - and this meant passing the Coffee Shop, and toilets, 16 times! This was important to me!!
I didn’t really practise as I do a fair bit of buggy pushing when we look after our two young grandchildren. We also have a dog so I do a bit of walking normally. Two weeks beforehand, I did another charity walk of just over 6 miles so I reckoned I could manage twice that just fine.
The walk was really easy, but that was because I had company all the way. Various friends and family members joined me for one or more laps. One friend did all 16 with me - Margaret is a real star! That turned out to be the biggest benefit of doing 16 laps - it was easy for people to join me!
I have done a few sponsored walks but 20K is the farthest I’ve done. Every time someone new joined me I got a real buzz. All in all, 16 adults, 4 children and 6 dogs helped me through the walk; it was amazing! And one of the best moments was when my 2 year old granddaughter arrived with a ‘Go Granny!’ balloon tied to her wrist!
After the walk I felt exhilarated. And my 2 year old grandson was waiting at the finish line with a bunch of flowers so that made me feel very loved indeed!
I have raised around £860 plus gift aid so that means over £1000 will go towards the WADD project. I am really keen to see something developed which will potentially help prevent people like Morag and Fiona dying from SUDEP - it’s such a waste.
I would definitely do this again, I am just not good at asking people for money - that would be the only thing that would hold me back from doing it on a regular basis! I have to say that Facebook did help with this. I could tell lots of people but it was easy for them not to donate if they didn’t want to, or couldn’t afford to. But they were still being made aware of SUDEP, so that was great.
I would encourage anyone thinking of doing a 20km walk for the charity to go for it, it’s really not difficult and doing laps like I did means that other people can join in very easily to help you on your way.