1 in 6000 people are diagnosed with Spinal Muscular Atrophy in the United Kingdom. SMA is a genetic neuromuscular condition that affects the nerves and therefore causes wasting of the muscles.
We spoke to the inspirational 26 years old, Tori Elliott over how she hasn’t allowed this medical condition to take over her life. With having SMA she has limited use of her limbs and has to use an electric wheelchair full time to live as independently as she can.
On Sunday, May 4th Tori, joined by her boyfriend David Brooker also 26 and her Personal Assistant left for an adventure of a lifetime in aid of Spinal Muscular Atrophy Support UK. SMA Support UK is a national UK charity that provides information to support families affected by SMA. They also promote and support research for a cure to the terminal disease.
She is driving herself across 15 countries in three and half weeks in her own adapted vehicle. Tori said, ‘I love the idea of city breaks but these are really difficult to organise when you are in an electric wheelchair. Budget airline flights and wheelchairs don’t mix as I know from past experience! So David and I thought let’s do it in one go with our own transport and all the equipment we need to ensure my safety. So we can overcome any obstacles we may face.’
Tori is currently half way through her road trip and has stopped in countries such as Venice, Barcelona and Budapest. However, the trip has been anything but easy, she said, ‘Unfortunately we had our tyres slashed whilst driving into Milan. This meant we had to miss our trip to Switzerland so they could replace the damaged tyre. This random attack couldn’t have been planned for, although we were stranded for 6 hours at night, we had a lovely few days in Milan.’
GM Coachworks a Motability suppler who provides a range of new and used wheelchair access vehicles along with their adaptation service, adapted the vehicle for Tori. The company have supported Tori from the very beginning, not only covering their fuel costs on the trip but they are promoting them using their network of contacts.
Two companies have kindly donated products to help Tori out on her adventure, MoLift donated a new battery for her mobile hoist which helps her to transfer from her wheelchair to her bed to the toilet. Promove donated a transfer sling which she will be using for emergency evacuation purposes. She said, ‘Without these sponsors my safety may have been compromised and I am truly grateful for their support.’
David initially was very worried about being so far away from home with all the readily available support in the UK. He said, ‘Tori was so determined to do it and felt so confident, that I had no reason not to be myself. After seeing all the planning Tori did and how much research she did into every aspect of the trip I felt totally assured that we could do it. I wanted to do everything I could to support her.’
The hardest part on the journey for David so far has to be, the massive difference in consideration for the disabled. He explained, ‘Whereas in the UK it’s easy to take a simple thing like a drop curb for granted and you don’t really even think about it until someone’s parked across one. In a lot of the countries we’ve been too they can actually be quite rare. It’s been eye opening how fortunate we are to live in a country that does so much to provide accessibility.’
To support Tori on the last leg of her journey, go to her JustGiving page where there are a number of ways to donate to this fantastic cause. You can also follow her extraordinary adventure by visiting her personal blog and YouTube page dedicated to her journey.