Proud mum, Jackie, tells Disability Horizons how her daughter, twelve-year-old Tilly Griffiths, has never allowed her disability to stand in the way of adventure.
Tilly was diagnosed with Spinal Muscular Atrophy on February 14th 2001, just a couple of weeks after her first birthday. I remember putting a note in a picture frame for a Valentine’s Day present for my husband Rolf saying: “We can do this!”
But, the impact of her diagnosis on the family was like a bomb going off. However, as the debris settled and we stumbled out of the ‘wreckage’, we realised how blessed we were to have such a magical little girl. Being uncertain of the future we vowed to make the most of every experience our two lovely daughters, Candice and Tilly, could have, despite Tilly’s obvious acute medical and physical barriers.
Tilly has never said that it is a shame she cannot do an activity, just wonders how she can do it. As such, Rolf and I have been determined to ensure that Tilly can take part in as many seemingly inaccessible activities as possible, making use of standard mobility equipment and using it in an unusual way.
So at the age two and a half and following in her big sister’s steps, Tilly began ballet lessons using a homemade ‘dancing frame’. Since then Tilly has danced on stage in many ballet shows, received a number of awards from the British Ballet Organisation (BBO) and is currently working on her BBO grade 1.
Last year, using her power wheelchair and arm-supports, Tilly participated in a Creative Learning Arts Programme where she performed in the musical “Fame” at the Regent Theatre in Stoke-on-Trent. Tilly is a now member of the theatre and recently presented a short monologue called “When I Dance”. The company are now working on a new piece to present later in the season.
Yet more adaptions followed to allow Tilly to explore and enjoy everything she possibly could. When it came to ice-skating, we used a mobile hoist and standing sling to enable Tilly to participate. For rock climbing, we used a crash-tested pushchair to get Tilly to the top of a climbing wall, so she could then abseil down again.
Now that Tilly is older, she is able to use a Balder power wheelchair for all her activities, which allows her to participate independently and comfortably. The amazing thing about her chair is that it accommodates her arm supports, so not only can Tilly feed herself, but it also allows her to be expressive when performing and also giver her freedom to learn to play the piano.
Tilly also loves activities out of her chair and is able to sail solo at Rudyard Sailability (RYA). Her dream is to win a gold medal in the Paralympics 2016, and the RYA is looking into providing support for her to achieve this goal. Tilly has been active in a six-year battle to gain planning permission for a new accessible boat store at RYA, and works tirelessly to raise funds to see it completed by April this year. So far we have raised nearly £400K and just need a mere £100K to get the job finished. Tilly is very ‘hands on’ and can be often seen in hardhat and high-viz jacket helping out on the site. The chair does need a power-hose down afterwards though!
But her adventurous nature doesn’t stop there. We have never been afraid to venture to exotic locations with Tilly, many of which include extreme sports of some kind. Tilly has tried skiing in a sit-ski in Austria and plans to visit Whistler where she has heard they have excellent ski facilities for the mobility-impaired. The trip of a lifetime was a journey to Africa for a safari. Tilly has had a desire to climb Kilimanjaro ever since the trip. That does seem a bit of a challenge – but, ‘never say never!’
Tilly has also been to Florida, once with Caudwell Children, which was fabulous, and once with the family where she has been able to swim with dolphins, go on an air boat and visit the Harry Potter attraction.
Back home, Tilly is active with the guides, going swimming, playing chess, going to discos, theatres, concerts, shopping and all the activities that young girls love to do.
Tilly’s chair has been the key to Tilly’s many adventures; it allows her to be Tilly. She once said during a routine service of her chair: “I didn’t feel like me without my chair.” Tilly says that everyone in her school says that her chair is, “really cool!” Tilly certainly thinks so too!
By Jackie Griffiths
Check back next week to read about Tilly’s new book, written to inspire disabled children.