Tilly's story: Sailing my own boat is so uplifting

Tilly Griffiths has been sailing since first sitting on her mum’s lap in a boat aged three. At seven she took the tiller of a dinghy for the first time and never looked back. At the age of one, Tilly was diagnosed with Spinal Muscular Atrophy (SMA), a genetic condition that means weakening in her muscles.

“The sense of freedom when I'm out of my wheelchair and sailing my own boat is so uplifting.”

Tilly's SMA type means she is unable to walk and uses a powered wheelchair to move around. She also has to manage regular chest infections and secretions, with her suction unit within reach at all times. 

Sailing has given her the chance to compete on a level playing field in a way other sports can’t, even racing against her older sister Candice.

Tilly is a member at Rudyard Sailability, near Leek in Staffordshire, which provides opportunities for disabled people to learn to sail and sail regularly as part of the nationwide programme from sailing’s national governing body, the RYA.

Independence has always been something Tilly and her family has fought fiercely for, with the 15-year-old now midway through her Year 10 studies at a mainstream school. Yet it’s on the water where she feels most at home. Tilly explains why.

“There is no other sport that I have come across that truly offers the same equality of opportunity, challenge and fun as sailing. I love having the opportunity to leave my powerchair and have a different seating position and a different way of moving.

It is so good for my posture as I have to work really hard to maintain myself upright and keep my head up too. Candice and I both have exactly the same sailing qualifications, which I think is awesome as she is incredibly fit and does rowing and dancing.

“I really love that I get to meet loads of different people of all ages and all abilities and have a whole sailing family at the Lake. It is great to be able to hang out with people that really understand things about my life and its various challenges and brilliant to share the joy of sailing with them as they too know how magic it really is.”

Tilly sails ‘Barbie’ - a bright pink Access dinghy with a light-touch electric joystick attached to her with a velcro strap. The boat cannot capsize and has a special seating system so that she remains upright. A club safety boat remains nearby at all times.

To get into her boat Tilly is hoisted out of her wheelchair in a sling and lowered down into the cockpit. She is lifted out in the same way and returned to her chair.

Tilly sails at Rudyard Sailability sail twice a week during the season, which runs from March to October, but she and her family are involved in the various activities of the club all through the year including fundraising and PR events.

Tilly, who also swims in a hydro-pool once a week and pedals on her static exercise bike, adds:  

“On land I use a mini-joystick and move around, which is great, but on the water there is a whole new dimension of thrill and challenge as I have to master the wind and remain in control.

“I love discussing all the turns and thrills with my sister or my instructor as I really want to improve.

“Sailing makes me feel so special as I'm the only person in my school using a wheelchair, but I'm the only one who sails solo. I absolutely love it when my friends come to the lake and they see me doing something that they can't. I so enjoy taking them out and helping them for a change as they normally help me. 

“I love the fact that I can take my sailing forward and develop and improve wherever I am in the world. Sailing is a precious gift that can't be taken away from me."

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