Donate now! Courage is Compulsory

Courage is Compulsory

Each and every year I feel extremely grateful that opportunities come my way. That's not to say that I don't put in my all to attain them, but when I was offered the opportunity to tell my story in a published biography, I couldn't turn it down.

So here's the next big project in my life, it's called Courage is Compulsory.

"Courage is Compulsory shares the stories of three young adults, each facing enormous challenges in their lives because of their life-shortening conditions. Lucy has Ehlers-Danlos Syndrome, with complications; Tori and Sam have Spinal Muscular Atrophy. All three are achieving remarkable things in their lives, in spite of, or because of, their conditions.

This book will be an inspiration to other young people facing similar challenges. It will show families of young people diagnosed with life-limiting conditions that their lives can be fulfilled. It will show health professionals that they should never underestimate the potential of these young people. It will describe to general readers stories of immense resilience and courage.

Lucy, Tori and Sam want to make a difference with their lives. We can help by getting as many people as possible to read their remarkable stories. They deserve our support, as do the charities that provide help to others living with the conditions. Courage is Compulsory is being funded through crowdfunding and the project can be viewed at"

This book will tell our individual stories, how trials and tribulations, our hurdles and how we overcame them. It's our legacy to pass on to other disabled people, and their families, during their time of need. We all hope that our strength and guidance can assist other's to follow in our wheel tracks, to lead the life they wish to without restrictions. Our experiences and in depth knowledge is valuable to other disabled adults and children, and we want our voices to be heard. But we need your help to get there.

We're 'crowd funding' to cover the publication costs of £12,000 and it all kicks off on the 29th of May 2015! If we can't collect enough sponsorship, all of the donations will be refunded and the publication will not continue.

So we're desperate for you to support us, and in turn support others by reading our stories.

We'll have lots of rewards for you too if you sponsor, such as t-shirts, your name in our supporters page, a copy of my very own children's books called The Phlunk, and you can even win the opportunity for me to give a personalised talk at your company! What more could you want!?

We aren't taking a single penny of this for ourselves, and all of the proceeds after publishing will go to the charity Together for Short Lives to support their tremendous on going work.

Download a leaflet here.
Donate via Crowd Funder here. (Opens 29th May!)

All other donations can be made directly to Southgate Publishers.
Cheques can be sent to Drummond Johnstone, but made payable to Southgate Publishers,
The Square, Sanford, Crediton, Devon, EX17 4LW.

World Rare Genes Day 2015

I decided to start my own thread for ‪#‎WorldRareGenesDay‬, and I thought I'd do my bit for raising awareness. Some people fight daily with battles unknown to their friends, as they don't allow the world to see them as a victim, and I hope thats the way you see me. So I'm going to tell you 5 small facts about myself that you may not know, to show how life-limiting illness do not need to rule our lives. Hopefully, some of my friends with NMD's will do the same? 
1. My condition is called Spinal Muscular Atrophy, I'm type 2.
2. My parents were told I wouldn't reach my 2nd birthday, I'm now 27 so thats a 1350% increase in life, suck it doctors!
3. A common cold can hospitalise me, so if I'm cautious to see you after an illness, please don't think I'm simply being a princess. I only have 20% lung function.
4. I could walk until I was 11 years old, with a frame and splints. My furthest trek was a whopping 23 meters along my primary school corridor!
5. I had spinal surgery at 13, with two metals rods place either side of my spine. I was told I'd stay in hospital for 5 weeks, but was let loose after only 17 days due to my determination. I'm still a little sad that I'm neither magnetic, or beep through customs security though...

Got a few spare pennies? Donate before Christmas!

Peaceville in Belgium: Part 2: The Gonewest Lichtfront event in Nieuwpoort

Continuing from the previous instalment about my time in Bruges, our next destination was the coastal city of Nieuwpoort. We knew that we’d be attending the Gonewest Lichtfront (or ‘Lightfront’ in English), but otherwise knew very little about the location and therefore spent the afternoon exploring the side streets and beaches. Our hotel called “Cosmopolite” was just on the beach front, and although fairly accessible, it was by no means out of the ordinary. We had two rooms, and my accessible one was nicely equipped with a big wet room and a bed with leg room for my hoist.

Although we had our own vehicle, we eagerly checked out the land tram for its accessibility features and I’m happy to report that it was wheelchair friendly! The pavement was raised to meet the doorway, with ramps inside if needed. It wasn’t a problem to explore this city, but I didn’t notice any accessibility features on the seafront such as beach friendly wheelchairs.

The Lichtfront was a multinational event on the most western point of Flanders marking the 84km distance from the beach at Nieuwpoort to the ‘Memorial of the Missing’ in Ploegsteert, where 8,400 torchbearers lit the path to commemorate the loss of lives during the First World War. We had prime viewing at the central location of the Albert I Memorial in Nieuwpoort, situated on the De Ganzenpoot locks. This enormous monument celebrates the life of King Albert and as the sun shone through the clouds, it looked beautifully golden. Though access was limited by a huge step, it was nice to admire from afar.

The event unfolded smoothly as the sun began to set, we were positioned between the TV cameras had a clear view across the locks. We watched the torchbearers come closer and could see the path of light glow for miles in the distance, and as it reached the lock, the bigger torches were lit. We were treated to a firework display which ran along the lock edge, that illuminated the surrounding trees which I thought evoked the feeling of the trench warfare. As a finale, the main lock gate ran with a fiery waterfall symbolising the rush of water into the centre of the lock, a metaphor for the joining of allies, which was a beautiful spectacle against the night’s sky. It felt almost magical as the smoke drifted across the lock and engulfed the mass crowd, whether it was intentional or not it felt like we had been taken back in time to a smoke filled war zone. And as the ceremony drew to a close, a 100 year old guest turned the locks levers to project the names of the soldiers who lost their lives during the war onto the Albert I Memorial, I felt truly honoured to be a part of such a special occasion which was put together so compassionately.

The Lichtfront was neither solemn nor was it commercialised; it was respectful and its beauty laid in the coming together of the community, illuminating the darkened path together as a united assembly from different cultures, countries and creeds. The event left us feeling extremely humbled, and extremely honoured to be part of it. It certainly won’t be forgotten, nor will the hundreds of thousands of men who lost their lives between 1914 and 1918.

This continues in Peaceville in Belgium: Part 3: Ieper, and the Last Post Ceremony.

Peaceville in Belgium: Part 3: Ieper, and the Last Post Ceremony

Peaceville in Belgium: Part 3: Ieper, and the Last Post Ceremony.

Here’s the final segment of my Belgium Peaceville adventure for Visit Flanders and Disability Horizons, in Ieper for the Last Post Ceremony. After waking up extremely early in Nieuwpoort that you can read about here, we were off to the tiny village of Poperinge, to be greeted by the most welcoming hosts at a beautiful AND accessible converted barn called Predikherenhof. I felt a little rude just dumping our bags and leaving, but we were in a rush to find the In Flanders Museum in Ieper, so we didn’t have much time!

Parking in Ieper proved to be a bit of a challenge. The streets were lined with markets as it was a Saturday morning, but the blue signs for disabled parking were few and far between. Thankfully, David drove the van so he was able to stop in the middle of the street, let the ramp down for me to exit the vehicle, close up and then parallel park in the small side street parking space and hold up 50 or so cars in the mean time. If I was driving there would be no chance for me to park and then exit through the tailgate ramp as the cars were all parked very tightly.

The In Flanders Museum was set in a beautiful building in the market square, originally another cloth house like the one we visited in Bruges. The Museum reflects on memories of the First World War and how major historical events impacted on the lives of thousands of people from many different nationalities. For disabled visitors, the lift is easily accessible and all of the exhibits are on one floor so it’s easy to navigate. As you begin your journey around the museum, you’re given a Poppy wristband to scan and load with your data such as names and birthplace, which you can scan around the museums exhibits to give you more in depth information relevant to your visit. The touch screens are all at a good height for wheelchair users though I personally couldn’t lift my arm high enough to scan my wristband to load my data, though a menial thing.

I found it quite easy to navigate around the Museum itself, even where platforms were raised and screens were mounted on poles at different heights. Visiting on Saturday morning meant that the museum was very busy, and because of this there was very little natural flow around the exhibits. People were jumping in gaps to where they could see something rather than letting the exhibits tell a story, which lead to us missing a few areas unfortunately. It was a much bigger exhibition than the War in Pictures: 14-18 in Bruges, and more about the Military side of the Great Wars effect on Belgium. I can also mention that the listening posts where you scan your Poppy wristbands were at a much more accessible height that the first data input screen, so it meant that I was able to use this device independently.

After lunch, my body decided that was enough. From the cobbles of Bruges, the rushing around in Nieuwpoort with press and the early mornings took the better of me and so we headed back to the B&B for a pit stop, an hours nap and some rural living. By 3 o’clock we were reenergised and ready for the next trip to the Tyne Cot Cemetery, the largest commonwealth cemetery in Europe. There lies almost 12,000 burials, the view is just incredible. I’ve never seen anything like it in my life, row up on row of beautiful white stones. The atmosphere was peaceful, not chilling, and I felt an overwhelming sense of respect and gratitude to the soldiers who are commemorated there. The entire cemetery is accessible, with modern ramps and plaques in the main centre, though there was one small step into the cemetery but my wheelchair could manage this.

From one very moving experience to the next, we were off to attend the Last Post Ceremony at the Menin Gate back in Ieper. This well known tune is performed daily as a final salute to the fallen, played by buglers in honour of the soldiers who died in Ypres during the Great War. We had been booked into a restaurant before hand but had been told to attend the ceremony early as it is very popular. Although our meal ran late, we still managed to arrive 30 minutes before the ceremony, feeling quite proud of ourselves. Little did we know, it was much too late, and we were around 40 rows from the front! By this point, the crowds were much too deep to find an attendant to show us to our front row space, so we mixed in with crowd and took in atmosphere. The ceremony lasted 20 minutes and is very humbling and the air is filled with emotion, it was almost a magical experience with the stars twinkling above the crowd silenced by troops.

That night, I had the deepest sleep of my life! Ready for our final day in Belgium with our only appointment being the Eurotunnel home, we headed to the Hops Museum in Poperinge after a few sad goodbyes at the B&B with their gorgeous dog called Pitou.

The Museum killed an hour, and we learnt about the crazy structures where the hops are grown which we had seen all over Belgium, but sadly there wasn’t a tasting session so we moved onto the Lijssenthoek Military Cemetery. Originally a field hospital during the First World War this place has an incredible story behind it, which I won’t spoil for you. Another big cemetery with over 10,500 graves, the visitors centre is much more interactive than Tyne Cot and you can even search for names of the soldiers buried there. My heart jumped up into my throat when I found 17 Elliott’s laid to rest. I don’t know of any ancestors who may have been in the First World War but having this connection with our names just put everything into perspective and how these men actually were people, who gave up everything to serve their country. I suppose when people don’t have that military association they can feel detached from the implications of war of families, and that they’re “just soldiers” rather than considering that they were actual people, with actual names. I am so grateful for having the opportunity to visit these places and to feel this connection, particularly on the centenary anniversary of the Great War.

And that was my adventure, all over in 4 very busy days. We immersed ourselves in the experience, and have returned with a totally different view of the Great War and to all of the men and women fighting in Wars today. With thanks to Visit Flanders and Disability Horizons, I’ll be wearing my poppy with pride every year to commemorate the thousands of lives lost, and appreciating the world that we live in today. All of these memorial sites, from the massive museums to the quiet cemeteries are all completely accessible in both a physical and emotional way, allowing people from all walks of life to discover the rich history that the Flanders Fields have to offer.

Peaceville in Belgium: Part 1: Bruges, and 14-18 The War in Pictures

Though not a history buff and in all honesty knowing very little about the Great War, our recent Peaceville trip to Belgium thanks to Disability Horizons and Visit Flanders was an adventure that I’ll truly never forget. Being given VIP treatment, meeting curators and partaking in the magnificent Lightfront event in Nieuwpoort, the 5 special days in Belgium were exceptionally moving and a very humbling experience.

I know that I’ve discussed how easy the Eurotunnel is for disabled travellers before, so I won’t go into too much detail there. An hour’s drive into Belgium and we arrived in fabulous Bruges, finding our hotel was right behind the Belfry in the main square, a simply fantastic location! The hotel was called Martin’s Brugge, and purely due to the location I can recommend it for disabled travellers. There’s ample parking which you can pre-book underneath the hotel, at a cost of €25 per night. Our triple accessible room was very spacious, and on the ground floor tucked away so it’s not in the busy corridor, another bonus. The doorways were widened, so there’s a generous amount of space for larger wheelchairs, and though the carpet is luxurious, my mobile hoist didn’t struggle when transferring from chair to bed. Thankfully the bed is on legs, giving lots of space for the mobile hoist to glide underneath as I had shamefully forgotten my bed raisers, tut tut, I was so focused on indulging in chocolate that I wasn’t fully prepared! The bathroom was very well designed for wheelchair access, with even space to transfer in the hoist still inside the bathroom! The obvious hand and grab rails were in situ, along with a nice big wash hand basin at a good height, which seems a luxury as many hotels put in tiny little lowered sinks in their accessible bathrooms. The wet room shower was fine and a powerful one, but there wasn’t a fold down shower chair or any other chair to use, so this may be an issue for other disabled visitors in future.

We were completely blown away by a magnificent meal at Burg 9 just off the Stadhuis square. All I can say is foodgasm. The service was amazing, and the food was delicious. And all accessible too I should also mention! The very talented chef was able to whip up an equally beautiful vegetarian menu for my PA on the spot, which was ever so appreciated and we all felt extremely privileged to enjoy the wonderful food there.

The next morning we were awoken by the beautiful bells of the Belfry in front of us, a twinkling magical sound that carries across the city. We met our Visit Flanders representative in the lobby along with a group of Australian Visit Flanders staff and journalists, and hopped over the road into the Belfry for our first appointment, 14-18 The War in Pictures with its curator Sophie De Schaepdrijver, who had just flown in from Penn State especially for the occasion. Let me first say, this woman is just captivating. I thought that I’d find the exhibition a little dull as the military history of war doesn’t usually grab my attention, but this exhibition focuses on the people of Bruges in a humanitarian manner and reflects the struggles of the city and it’s people. The life and emotions that Sophie has been able to revive through years of searching for exact artefacts, is astounding. For instance, uniforms were presented in floor units as if they were simply cloth, rather than stood upright in an oppressive and domineering way as if the soldiers themselves were approaching visitors. The exhibition ranges from flirtatious photographs to wall paintings and even the first examples of aid work, where lace makers sold small pieces in return for charity aid money. The whole curatorship has been incredibly well executed leaving us feeling warmed by the courage and continuation of life, which occurred during horrific circumstances.

There wasn’t a problem with accessibility, as they have a stable metal ramp for access however be wary of the cobbles inside the Belfry courtyard, you know that Bruges is covered in cobbles anyway! The exhibition has been well laid out so there is a clear flow in which to explore it, with a translated guidebook available for English speaking visitors. The cabinets are on multiple levels depending on what is being displayed, but all of which were accessible to me in my wheelchair. Further to this, the interactive lecterns throughout the exhibition are all at optimal height for wheelchair access, though not too low that able-bodied visitors had to stoop to reach it. The angle at which it was set is key, so very well done to them for implementing this feature.

Access to the upper floors of the Belfry cloth house was via a fairly good sized lift situated by the accessible toilets, handy! The architects have cleverly integrated the modern lift within the historical building by setting it behind an original heavy wooden door, which I thought was a nice touch as it kept the atmosphere of the historic building alive even if we had to access it through a modern convenience. Upstairs was another exhibition where we met its curator David van Reybrouck. The exhibition of photographs from a selection of the Magnum association was given the brief of showing how the First World War was commemorated in their country. The variation and creativity in this exhibition was extremely moving, and the general curatorship was exceptional. The large tunnels of photographs encase a modern premise but do not block the view of the beautiful cloth warehouse roof that this space has. In the second section of the exhibition, you’ll find original glass plate photographs from the First World War having been restored by Carl De Keyzer and enlarged on an epic scale. The details in the photographs are just astounding; I would never have thought that photographs from this time could be so detailed. The large tunnels were in situ again in this exhibition but placed in a more regimented line, evoking the feel of the trenches and the shards of sunlight that flooded between them. Watch out for tighter access for wheelchairs, I was lucky that we saw the exhibition privately so we didn’t have many visitors around us, but if the exhibition is busy when you visit, it might be advisable to take your time when exploring the exhibition. On the back of the tunnels, David has another series called “Lamento” a collection of suicide notes left by young people from the area. Little information is known about why, but this area of Belgium has the highest rate of suicide in Europe and the notes are extremely emotive.

We had a lovely bright and colourful lunch at Arthies restaurant and had the afternoon free to explore the city. Luckily everything that we wanted to see was in walking distance but I made sure that I checked the public transport, and all of the bus routes had disabled access with ramps on the busses themselves. So no real issues here. We had a Bruges city card each courtesy of Visit Flanders, which meant we were able explore free of charge. Since we’d already visited Bruges in May, we decided to visit some of the places that we had missed! The heavens opened and we had to wait for about 10 minutes under the Belfry in the pouring rain, it was all a bit surreal and a bit magical, I loved it, before diving straight into the Salvador Dali exhibition next door. Wow. Now THAT was surreal! Great to see his work up close and personal, and it was refreshing to fit in one of my other passions whilst we were on the Peaceville trip, and a little lighter than the mornings activities. The gallery is accessible, with metal ramps on the staged areas, but it was a little annoying that the receptionist kept the rail of Dali tee shirts in front of the wheelchair entrance. Following that, we went in search of the Chocolate Museum, but I’m sorry to say that it was totally inaccessible for disabled visitors, and the staff were not at all happy to help. I quickly Googled “the best chocolate shop in Bruges” and was recommended Dumon, which we found and I subsequently dribbled in front of the window. Again, no access as it’s an incredibly old but beautiful building. The smell of chocolate was so intense and the woman sat behind the counter was the great grand daughter of the owner, and she had her children and possibly even grand children working there too. There are many other accessible chocolatiers in the Stadhuis Square, and I can recommend that Stef’s was the best along here. The Basilica of the Holy Blood was sadly closed at this time, but we wandered around the beautiful but bumpy streets of Bruges, did a little retail therapy and indulged with a Belgian waffle or two. Another delicious meal followed suit, served at De Florentijnen, a very modern and beautifully presented restaurant, whereby you’re welcomed with hundreds of bottles of port! The food was simply delicious, another 4 course set menu and they were extremely happy to accommodate my vegetarian PA at a moments noticed. The small lift at the back of the building allows disabled guests to sit on the mezzanine floor, which is much quieter and a great atmosphere.

In all, a fantastic time in Bruges. The next morning we spent a few hours wandering through the same streets but in daylight and collecting some souvenirs, and I think it’s safe to say that Bruges has captured my heart and I’ll be returning some day. Learning about its history, turmoil and struggles just made me fall in love even more, and because the city itself is so easy to navigate it’s a terrific opportunity for wheelchair users, baring in mind that there are the odd step or two to negotiate, which is to be expected of such a historic place. Though the bigger buildings, Basilicas and the like have been made accessible for all, so if you’re a wheelchair user with a passion for historic architecture, Bruges is definitely a good place to start your next adventure.