I am running the Brighton Marathon in memory of my daughter Fern who died tragically and unexpectedly aged 19 on the 14th April 2015 just a year and 3 days to the date of the marathon this year.

This will be my 4th Brighton Marathon but the first one without the support of Fern. She always came and supported me and inspired me with Simon Pegg's Run Fatboy Run training plan, accompanying me to the gym and threatening me with a spatula!

She has left a massive hole in our lives and of those that knew her, this race won't fill that but it does seem a good way to mark a year since her death by raising much needed awareness of this dreadful condition.

EDS UK provides help and support to those who live with Elhers-Danlos Syndrome and provide information and support to the medical professionals which in our experience is something that is much needed. They are a small charity compared to the big boys so would really benefit from our help. I would also like to raise awareness as many people who live with this condition show no real outward signs to others and as such find they do not receive the help and understanding they deserve.

My friend Mick Jessop has chosen to run his first marathon in memory of Fern. We were all really touched that he has chosen to do this and raise some much needed money for EDS UK.

Please support me and donate any amount you can to raise money for this charity. It would be great if you could also forward this link to anyone you know who may be interested in sponsoring me or Mick and raise awareness of this condition.

Due to this devastating condition Fern will not be there to cheer me on at the finish line, but she will be with me as always, every step of the way.

Ehler Danlos Support UK "making our invisible visible"

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