In 1999, we had a daughter, Holly, born with CMN. Very sadly for us all, complications related to her condition proved to be terminal and she passed away aged 10 months. 25 years on, we are still very much in touch with the charity and who’d have thought that the seeds sown all those years ago would have grown into such a strong and beneficial entity. As a way of marking what would have been Holly’s 25th birthday we decided to organise a coffee and cakes fundraising event in August 2024 to see what we could raise to help support the Charity, particularly the drive towards raising funds to progress the clinical trials.
Sometimes you cannot anticipate how wonderful people can be and, yet again, the generosity, both financially and in terms of human spirit, came to the fore. Yes, the usual friends and family who always step up to the mark were there when we asked for their support. Most of them know our history and Holly’s part in it. However, the tremendous support from those who knew nothing (or little) of Holly was stunning, both on the day itself and leading up to and after the event. People came out of the woodwork to make cakes and donations, even if they were not able to come on the day.
The day itself couldn’t have been more perfect as far as weather and turnout was concerned. In fact, people were having such a good time they didn’t want to leave – due to everyone’s generosity we had enough cakes, scones and sausage rolls to keep them all happy! Special thanks go to our lovely friend Sally for her ongoing support both in the planning and the execution of the event, particularly in providing a continuous stream of hot and cold drinks, as well as having made cakes galore! Family came from as far away as Yorkshire and Nottinghamshire, making the long and arduous journey to Norfolk on a very hot day contributing to what was a great atmosphere. We also discovered there were connections between friends that attended the event that previously we were totally unaware of – and, to be honest, it was more like an all day party. Having our daughter Meg there and Martin’s elder daughter Anna made the event even more special and at times like this it reminds us that if we hadn’t gone through what we did with Holly, Meg may not have been in our lives today.
We raised a fantastic amount of £2156.00 in total, which far exceeded our expectations. Almost equally as pleasing, we were particularly happy to have raised awareness of CMN, as many of our friends were not fully aware of the condition and its impact on the people living with CMN and those around them.
With careful planning and organisation, and being blessed with great summer weather, we were able to raise funds and awareness of CMN through what turned out to be a fantastic social event enjoyed by all those who attended.
What a lovely day it was to remember Holly and to contribute towards such a wonderful cause run by such a great team of dedicated people. We will obviously never forget Holly but equally we will never forget the support from CMN and the tremendous strides that have been made over the last 25 years.
We will definitely be repeating this event again in the future – why not consider organising a similar event yourselves. We thoroughly recommend it!
Martin, Jackie, Meg and Anna
