“Making something positive out of something negative”
“We chose to support Action Duchenne because not only do they focus on research & educating, but they also focus on the whole journey, by supporting families & connecting families.”
Ruth and Ian Taylor’s lives changed forever on the 14th January 2020. Their much loved 2 year old son Max was diagnosed with Duchenne muscular dystrophy. While the world reeled from the impact of the Covid 19 Pandemic, Ruth, Ian and their families were trying to cope with the loss of the future they had planned. Devastated and numb with grief, Ruth threw herself into work and felt unable to do much more than make it through the day.
As Ruth began to process her feelings, her sister contacted Action Duchenne. Through regular support calls with our staff, an invaluable introduction to another family at a similar stage and help with the practical challenges that Duchenne brings.
“I didn’t feel alone.They listened to my fears, sadness, loss, and hope. They were so kind and supportive. The Action Duchenne support team, our new friends and our support bubble gave me hope.They opened my eyes to a new kind of life.”
Ruth and Ian began to feel that a new kind of life was possible.
Ian decided to set himself a physical fundraising challenge as a way to channel his grief into something positive. He took part in a Tough Mudder in 2021, propelling himself out of his comfort zone to raise over £7000 for Action Duchenne. A conversation over a glass of wine with friends soon afterwards ignited the spark of Ruth’s own fundraising project.
On March 25th 2023. Ruth and the group of friends who became the committee (Sally, Vicky, Deb and Sadie) organised an amazing black tie dinner dance at Aston Villa Football Club. The event had over 330 people, live bands, a DJ, a raffle and a silent auction and an auction.
Ruth was determined from the outset that the event would be polished and professional. She approached local businesses and began to tell her story. She started talking about what Duchenne is and how it has impacted the lives of her family and friends. The overwhelmingly positive response combined with the incredible generosity she encountered allowed her confidence in sharing her family’s experience to develop. As she came across more and more people who hadn’t heard of Duchenne, just as she hadn’t before Max’s diagnosis, using the event to raise awareness became a driving factor.
The five members of the committee took on different tasks, soon spreading these out among friends and family. It truly was a joint effort in every sense, and an incredible amount of work and dedication.
The event itself exceeded every expectation. The venue looked spectacular, the music was pumping and the room was filled with love and laughter. After everyone had enjoyed their meal, Ruth gave an incredibly moving speech. There wasn’t a dry eye in the house as she spoke eloquently about the journey her family had been on since Max’s diagnosis. Read Ruth’s full speech below:
Throughout her speech, Ruth reflected on how her and Ian’s involvement in Action Duchenne had helped them, from attending the Annual Conference, to taking part in peer to peer support and speaking to our support workers. They feel strongly that the support Action Duchenne provide from diagnosis right through the Duchenne journey has been a lifeline for them. They are determined that through raising awareness and funds they can be part of ensuring other families are able to benefit from it both now and in the future.
Four members of Action Duchenne staff team were honoured to attend the evening and to witness first hand the power of the love Ruth and Ian have for their son alongside the strength of the community behind them.
Brilliant prizes from local businesses and organisations for both a raffle and an auction fuelled the fundraising, the generosity further demonstrating that the community have taken this family into their hearts. More music from bands and DJ’s kept the dancing going into the early hours, allowing Ruth and the committee to let their hair down and enjoy the results of their incredible work.
Determined that this would be an opportunity for fun, the underlying aim of the dinner dance was to bring something positive out of something that had turned Ruth and Ian’s lives upside down. We were truly inspired by Ruth and Ian’s ability to use their sadness and grief to fuel an event filled with love, support and hope.
The incredible amount of money raised alongside the awareness that the event generated will make a real, tangible difference to the lives of those affected by Duchenne muscular dystrophy both now and into the future. Here are Ruth’s final words from her amazing speech, giving us all real food for thought.
“To end I would like to share a few things I have learnt in the last few years:
- You are so much stronger than you think.
- Your limits are set by you, and you alone.
- Don’t take no for an answer if you know it’s not the right thing.
- Ask for help when you need it.
- Take time for yourself & don’t feel bad for it.
- Time is the most precious thing we have. Don’t waste it. Cherish the time with family & friends. Tomorrow isn’t guaranteed.
- Life is not meant to be lived later.”
On behalf of everyone at Action Duchenne, we want to say a very big thank you to Ruth, Sally, Vicky, Deb and Sadie for organising an incredible Charity Dinner Dance in aide of Action Duchenne.
Watch the full interview with Ruth and Ian here
The story behind Ruth’s charity dinner dance
