Here's to the start of something amazing!

This is the very first step of our SMAll adventure; a 4000 mile trip around Europe... in a wheelchair!

We've decided to create a blog in order to keep everyone informed of our plans and intentions for this mammoth trip of a lifetime, and to also document every pinnacle moment and big decisions made for any other disabled traveller, as a guide and our suggestions to promoting independence. 

Why are we driving so far?
Having a physical disability and using a number of mobility aids such as electric wheelchairs and mobile hoists can often put a strain on holidays abroad, but this entire trip is to demonstrate how easy it can be with forward planning and the ambition to achieve. This combination is all you need to live an independent lifestyle, whether you're able bodied or have any form of ailment. 

In the past, we've taken my electric wheelchair abroad and it's been damaged on two separate holidays by the airline crew, so I've become quite apprehensive about taking it on any more planes even though I've been thorough and well organised in explaining how vitally precious the chair is to me, and removing certain pieces as carry on hand luggage. In fairness, I think I've been unlucky in these cases as I know many other wheelchair users who have had perfect service from both massively international airlines and the budget ones too. So I'm not saying that I've given up hope, I just need a little more time to trust flying again!

We're at the point in life together where we are wanting to explore and take holidays, but city breaks are proving to be far more difficult than we anticipated. With the upheaval of transferring from wheelchair to plane, wheelchair damage etc and rushing around for 2 nights in a European city, only to return home as stressed as we went, we feel it just isn't worth the cost. Mentioning this, having to pay for an extra flight, insurance, and of course hotel room for my carer doesn't come cheap either, where hotels often won't give a single person discount. I'm forgetting to consider hiring (and paying for!) a mobile hoist and pressure relieving mattress from a local company, so much to think about for two days abroad!

So we thought, let's do it all in one go! We can take all of my equipment in our own form of transport, and we know it'll work effectively and be safe.

What is S.M.A. anyway?
S.M.A stands for Spinal Muscular Atrophy and is a devastating, genetic disease. It is a leading genetic killer of infants and toddlers, with 50% of the most severely diagnosed cases resulting in death by the age of two. The condition affects motor-neurons in the spinal cord, which in turn results in muscular weakness, leading to severe disability and the possibility of premature death. Children with a less severe form of S.M.A face the prospect of progressive muscle wasting, loss of mobility and motor function. But their minds are unaffected resulting in bright, intelligent children with varying degrees of physical impairment.


-S.M.A. is currently incurable and often fatal.
-1 in every 6,000 births is affected by S.M.A.
-1 in every 40 people is a carrier of the defective gene that causes S.M.A.
-the child of two carriers has a one in four chance of developing S.M.A.


How does this condition affect my daily life?
It isn't until I stop and answer this question that I remember I'm actually disabled. This sounds a bit ridiculous but its honestly true, I've never let the condition itself bother or affect my life and my choices. 

I live in an a happy little adapted bungalow with my boyfriend David (who is able bodied), our chunky chocolate labrador and a naughty little kitten. I have a live-in 24hr care package provided by an agency, whereby a Personal Assistant (or PA as I like to refer to them) lives with us for assignments of 3 weeks at a time to provide the care I need. They help me in all matter of degrees of care, from helping me to shower and dress, to just being in the background if I need them. After graduating from University College Falmouth and being completely independent, I decided this was the correct type of care for my needs, where someone can be on hand to ensure my safety but promote my independence without mothering me. There certainly isn't three people in our relationship, and we insist that PAs give David and I time together as any other couple. We believe in living our lives as any able bodied couple and in this way, David does not provide any care for me as I feel it would most definitely put pressure on our relationship, although if I really need his help he is of course there in an instant, for the important things like fixing my wheelchair or making emergency cups of tea, right!?

Why travel now? Why not wait until David graduates?
David and I are the type of couple who most definitely spur each other on, and so far nothing has beaten us from reaching our past goals, our hopes and wishes. So why not stretch ourselves a little further? A good friend told me that we make our own luck, so this is exactly what we are going to do. 

I've just taken delivery of a brand new wheelchair, and, within a few months will have my brand new VW Caravelle fully adapted for me to drive from my wheelchair (even though I'll be very sad to see my drive from wheelchair Kangoo go!), so with two new pieces of equipment which in theory should be fit and healthy, it seems like a great time to not have to worry about them. I also have two excellent PAs who would be able to care for me during the trip, whom I trust would be able to care for me in any eventuality. With this in mind, I'd like to take the opportunity before they change careers or countries!

Moreover, I'd like to see the world before it becomes too difficult for me to do so. Yeah, some days I get achey and I suffer with severe Osteoporosis too, so I want to push myself now whilst I'm still young and can take a bit of the rough side of travelling! Likewise, whilst David is still able to pick me up and throw me if he needs too!

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And this is the beginning of something so special. We both really hope that this blog will encourage and inspire many other disabled people to see more of the world, and not to worry about the challenges they may face. We aim to document everything we can with planning this trip and on the road itself, recording our inevitable hurdles and how we clambered over them. 

We're going to drive 4000 miles around Europe with an electric wheelchair, it's going to be an incredible journey! Keep up to date with our latest news by clicking here.

4 comments:

  1. Wonderful what great plans you two have! I'm really looking to reading all about your adventures :) Are you interested in meeting other people with SMA during your journey? I'm from Germany and if you like I would really appreciate meeting you. Or even host you in my flat if you think it's possible for you. Feel free to contact me!

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    1. It would be lovely to chat! I'm sorry that I don't speak a word of German although your English seems better than mine ;) Please do email me at tori.elliott@gmail.com

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  2. Hi Tori, what you are doing sounds amazing! I am very jealous! what a shame you no longer have your Sirus Kangoo, Im glad that your car served you well for six years and hope you like your Caravelle. Everyone here at Sirus wishes you all the very best with your exciting adventure, and I will be in touch as Im sure we will be able to offer our help. I will be in touch so we can have a chat about this. And more than happy to share your journey through our social media! I will put you in touch with our Social Media team at Sirus...
    All the best of luck, I will speak to you soon.
    Vicky (Sirus Marketing Manager).

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  3. Good luck Tori from all at The SMA Trust in the UK.

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