Etac powerchair owner Tilly Griffiths, 12 from Staffordshire, is a truly remarkable young lady who despite having Spinal Muscular Atrophy (SMA), sails independently at Rudyard Sailability near Leek and demonstrated the charity’s new hi-tech boathouse to HRH Princess Anne on 24th April 2013.
Tilly Griffiths lives life to the full and has achieved so much to raise funds for fellow children living with disability whilst inspiring them all with her positive attitude. Even though Tilly has SMA, which is a progressive neuromuscular disease, she enjoys life and “would not be herself” without her Etac powerchair. Supported by parents Jackie and Rolf, along with older sister Candice, Tilly has raised over £2 million for the Caudwell Children’s charity, carried the Paralympic torch and continues to publicise her book ‘Tilly Smiles’ which was written to raise funds for The Jennifer Trust. In addition to her busy school and social life, Tilly is a dedicated sailor and has been committed, alongside her parents and other club members, to building a new state-of-the-art boathouse for disabled users. This new boathouse, which is nearing completion after eight years of planning and construction issues, houses up to 10 specially adapted Access sailing dinghies that can be operated by individuals with limited mobility. These boats can be stored, rigged and launched automatically via simple electronic controls that sailors such as Tilly can easily operate from her ‘tiger-striped’ Etac powerchair. To show her support for this remarkable project, the Patron of RYA Sailability, HRH The Princess Royal, visited the Rudyard centre and was able to experience the new boathouse first hand with the help of Tilly’s demonstration.
Tilly explained: “I have been sailing since the age of three when I used to sit on my Mom’s lap. At age seven I was able to take the tiller of a dinghy alongside an instructor and I now have a RYA 2 rating. I was a little bit nervous about meeting HRH Princess Anne however she was really easy to talk to and very friendly. She spent around an hour with us along with Her Majesty’s Lord-Lieutenant of Staffordshire and I was able to show them how I operate my own pink Access dingy named ‘Barbie’. The Princess listened intently and then we accompanied her to the Clubhouse for a short function. Before she left for another official engagement, my sister and I were given the unique opportunity to present a posy to her – wow, what a day and another one I will never forget!”
RYA Sailability is the charity that encourages and supports people with disabilities worldwide to take up the sport. It has helped Tilly gain independence on the water through the provision of specially adapted sailing boats with motorised controls that can be operated with minimal physical effort. These Access dinghies have in-built lead keels so that they cannot capsize and offer a safe and enjoyable hobby for individuals such as Tilly. In the new boathouse, Tilly can be hoisted out of her Etac F280 powerchair, lowered into a dinghy and then she can independently raise a launching platform and cast off onto Rudyard reservoir.
Jackie Griffiths, Tilly’s mother and club treasurer concluded: “Today has been so special. Our Sailability centre has been open since 2001 and welcomes over 2,000 visitors each year with the opportunity for every disabled person to sail, regardless of capabilities. Despite all the issues we have had to overcome during construction of the boathouse including severe landslides, floods and extreme weather, we are so proud of what we have achieved and the remarkable opportunities it now offers. We would like to thank all the marvelous businesses that have kindly donated over £300,000 worth of materials and equipment to the overall £500,000 project costs – without whom this boathouse would never have been a reality. We have been greatly inspired by HRH Princess Anne visiting us today and this will further motivate us to raise the final £25,000 required to complete construction this summer. I was so proud to see my daughter talking to the Princess and clearly explaining the amazing difference this new boathouse will make to her and other sailors. On behalf of all the Rudyard members, I would like to thank everyone who has supported us today and especially the HRH Princess Royal for finding the time to visit us.”