It Takes My Breath Away...

It's been a busy few weeks since school started up again, and I'm definitely starting to feel the difference now that my exams are looming in the relatively near future. We've now completed the fourth week back, but I can safely say that by the fourth day my chest had already filled up with secretions, meaning all of my respiratory machines were, once more, called in for action. Everybody seems to get some sort of cough/cold at the start of term, especially after the summer holidays, but the difference for me is that I find it more difficult to get the rubbish up and off my chest. Luckily, thanks to all of my amazing equipment and round-the-clock intervention, I was able to stay well enough to enjoy of the exciting things that we'd planned for September so far...

The first on our list was The Donna Louise Children's Hospice's 'Shining Stars'. I thought that this would be a great opportunity for me to have a go at performing some of my own songs on the keyboard whilst singing, as it's not something that I'd ever done before. I was worried about my hands being too cold to play - as I've said before, they're useless when they freeze - but in actual fact, they were so sweaty because the nerves that my fingers were slipping off the keys! It wasn't a big event by any stretch, but for me it was a chance to build confidence and have a go at sharing the thing that I love.

My debut!

A few days prior to this event, our family received a surprise invitation to the Crème de la Crème Ball in Alderly Edge hosted by Ashley and Dawn Ward. These two people have worked so hard over the past years for Caudwell Children, and now host an annual ball to try and raise as much as they can for the charity. The room looked fabulous, decked out in the style of the French Riviera, and it truly was a magical evening. I was asked to do a little speech about how my chair has transformed my life, and how much it would mean for other families to receive one just like it. I do get slightly nervous when I talk to quite a lot of people like that, but I'd definitely say that I was more nervous when performing on the keyboard to only 20 people! When I speak about my chair, I don't ever write anything down, but I find that once you're up there it all seems to flow - except that when under pressure, I tend to come out with really random phrases like 'the cherry on the top!' which I've never said before in my life.... My Balder (power-chair from Etac) is such a huge part of my life, I have no trouble telling people about it from the heart. The compare decided then to ask if 20 people could pledge £1000 each (with 12 months to fundraise if needed), together they would be able to buy a child one wheelchair which would change their life drastically for the better. An astonishing 40 wonderful people raised their hands meaning that Caudwell Children could provide two children with life-changing wheelchairs, which was honestly better than we could have ever imagined! Just when you think all of the amazingness has happened for that night, one extremely kind and generous gentleman put his hand up and said that he would like to buy one whole chair for a child - that's £20,000! People often say to me that that sounds awfully pricey, but if you break it down, it costs next to nothing per day. I get into my chair at 07:00am and I'm in it until at least 10:00pm, but if attending a ball, that will definitely be a lot later! Even more astonishing, after the big auction, another big-hearted gentlemen donated  a further £20,000 for a whole chair, bringing freedom and independence to a child's life. 

 Matt Evers from Dancing On Ice!

 

Anthony Cotton (Sean) from Coronation Street!



It was a magical evening, with beautiful décor and surround by a whole host of celebrities, but the kindness and generosity of some people in this world really does take my breath away.

 

It was a big bump back down to Earth on that Monday morning at 06:00am after our fabulous weekend, but I guess we had to come down from cloud 99 at some point. My little chest infection started to get gradually more fierce as the week progressed, and by Wednesday I needed my cough assist whilst at school. I've said before that it is a huge piece of kit, and unfortunately this means that if I'm needing it quite regularly, I  have to be at home. We're hopefully getting a more portable version soon, and so fingers crossed it will be a lot easier. When I was off for nearly six weeks last year after my surgery, my Teaching Assistants made sure that I was kept up to date with all the work, and even came to the house a couple of time to make sure I was okay with everything. They've continued to ensure that I stay on top of all my work when I'm off, as it's rubbish when you get back after a long period of time and don't have a clue what's going on. People may look at me and think 'What's she having time off for? She's hardly ill at all!' but we find that coming out of school as soon as we can, and working round-the-clock to try and clear my chest seems to - touch wood - keeps us away from the hospital.

Just one of the machines in the tool box...



On a normal day there is quite a high risk of me choking, involving streaming eyes, red face, unable to speak, and basically, it takes all my breath away. This happens from time to time, but thanks to my suction unit (secretion hoover, a bit like at the dentist), cough assist etc. it can be quite easily solved. We do take it seriously though, as there can be severe consequences.

Luckily, we managed to keep this little chest infection at bay, meaning that we were still able to travel to South Wales for the family gathering at my Nana's. Car journeys are usually the worst thing for a dodgy chest, and so it probably didn't seem like the most sensible idea to drive 3 hours down the motorway, but as long as I don't fall asleep, it's generally okay. The party was great, and the weather was perfect for sitting outside and enjoying the last moments of summer. Unfortunately, the person living in the house behind also though that it was the perfect day to light a bonfire, consequently, once more, clogging up my chest! But hey, it was still a lovely evening and, with a few extension cables and a cough assist in the back garden, nothing can stop us!

Apart just the huge amounts of school work piling up, the other reason for the delay on this blog is that my arm supports went into 'melt-down', most likely caused by overuse! The company (Neater Solutions) were fantastic and immediately sent out a replacement set to take over whilst they set me up with new and even improved arm supports asap. Fortunately my fab Dad was able to take care of the oily bits and carry out the swap.  Having to last two days without my arms - literally, next to no use of them - does make you realise just what an important part they now play in my life. Everything from feeding myself, to writing, typing, scratching my eye-brow, to playing the keyboard is snatched away, and with it goes the majority of my independence. Interestingly, my breathing is also affected with my arms and shoulders motionless all day, and even my posture, straight away starts to deteriorate, and my head control is significantly weaker - it doesn't seem like your arm movements would affect so much of your body, but they really do!

All fixed up with the temporary set of arm supports for now, with my chest feeling so much better and desperately trying to catch up on all the work that I couldn't do whilst I was out of action, but hopefully I will be able to blog again in the very near future.

Write soon,

Tilly,xox

All Rocked Out!

Wow, I honestly don't think that I could have asked for a better Summer than this one! During the last week of the holidays we made our annual pilgrimage to South Wales to visit my Mum's family and it's lovely to go and catch-up on all the news, as well as just being able to chill out before the hectic school year begins. Normally we'd spend most of the days down at the beach on Barry Island (locally known as Barrybados) but as the weather was against us on that one this time, we decided to spend our time either shopping in Cardiff; back at my auntie's house playing Scrabble with our Nana; or strolling along the promenade with our Fish and Chips and an ice-cream! It's a hard life, it really is! If the sun was to kindly grace us with it's presence and we were to go down onto the actual beach, I would use either my 'all-terrainer' or a manual wheelchair, as asking my fantastic chair to negotiate the sand - as well as all the other functions it has! - might just be one step too far for now, but trust me, it won't be long.

 Riding on the crest of a wave!

 

 Happy as a sand girl!

 



 The sky's the limit!

 

All of my pieces of equipment are all fantastic at what they do, but it also take the enthusiasm and good-will of the people around me to make things like this possible. For instance, on our recent holiday to the Dominican Republic (it was a-ma-zing!), I took along my manual wheelchair as well as my electric chair, just for simple things really like getting around the airport and, of course, accessing the beach, and it was absolutely perfect. It has a very supportive seating system to help with head control etc. and meant that I could even do things like go on a boat trip which would have been practically impossible without it.

 



 

 Health and Safety who?!

 

Having said this, being in a manual chair does mean that all of my independence is completely gone, and I'm no longer free to choose where I go, what I do, or even when I can scratch my nose! My arms aren't strong enough for me to self-propel even a little way, and so I'm just stranded until someone is free to push me around. There's also the smaller things that you perhaps wouldn't think of, for instance, being able to feed myself. My arm-supports are powered through my electric chair, and so when I'm out of it, I pretty much lose the use of my arms too. Despite these things, I would definitely say that some sort of a manual/all-terrain chair is a must, simply because it opens up so many doors that might otherwise be locked.

 

After packing up the car on Saturday morning (even if we're only staying for two nights we look like we're moving in), we set off from Wales and headed for Fusion Festival in Birmingham! We'd been to this one in 2013, and so we kind of knew what to do, where to go etc, but with everyone being so kind and helpful, there really would have been no issue either way. We once again managed to claim a spot on the front barrier, but this time there was a 'Golden Circle' (an area around the front of the stage that's sectioned off for people with wristbands), meaning that we were competing with a slightly smaller number of people. Our friend Angelique was travelling over from Holland that day for the concert, and so we were praying that there would be just enough space for her to join us as she's currently reliant on her wheelchair.

 



#FestivalSelfie! 

 

We met Angelique back in December last year whilst queuing for the Union J concert, and since then we've spoken in some way or another practically every day! I'm not exactly bombarded by friendships at school to say the least, and so I think I can safely say that Angelique has become one of my very closest friends (despite the however many hundreds of miles between us!). We've now met up twice since the Union J concert, and then it turns out we both - by chance! - booked tickets for The Vamps for the same day, and so it'll only be a few weeks until the next time!

 

The concert was amazing, featuring huge acts like The Loveable Rogues, The Vamps, Rizzle Kicks, and Pitbull! The vibe down in the crowd is incredible, and I think that that's the stem of my problem with the accessible platform - the view's great (well, of the screens anyway) but there is absolutely no atmosphere at all! Most people struggle to see at a festival simply down to the sheer amount of heads, and of course, with my chair I'm at no disadvantage as I can go up to practically their height, but I'd much rather have to slightly compromise on the view any day! Having said that though, I'll still be fighting to get on that front row just as hard as anyone else will be!

 

 Up close and personal!

 

Angelique also happens to be rather fond of a certain Mr Ollie Marland, consequently travelling halfway across Europe to see him, and it turned out that he was in actual fact there on the Saturday, just not performing until the Sunday. I know I've said it before, but this was just even more proof of what a genuinely nice person he is. We bumped into him with his friends and family on the way out of the arena, and he instantly stopped to have a huge chat and lots of photos. He was so sweet, and took the time to talk to us all, so comfortably and naturally, and he so clearly, honestly cared. We hadn't ever imagined that we'd get to see him that night, and that just made the whole thing extra, extra special.

 

 

We stayed at the Premier Inn just minutes from the venue to save travelling there and back, and so after quickly grabbing our compulsory McDonald's, we got straight into bed, preparing ourselves for day 2! Because of the vibrations from the concert, my chest can sometimes fill up with secretions, so we always take along my cough assist if we're doing a night-stop, just in case. Without this hefty machine, my coughs are quite weak meaning that if there's a bit of rubbish on my chest, I really struggle to get rid of it. The cough assist looks quite scary, but all it's really doing is pushing air in to inflate my lungs (via a mask), and then sucking it out, hauling all my problematic secretions with it. Although it's not exactly complicated, this machine can be the difference between staying at home or dialling 999. We took it along into the field on the Sunday as a precaution more than anything, but the problem is, using it does require a plug socket. Luckily we have just been told that I can have a new, portable version as, to be fair, I have had mine for well over 10 years now! It will be a complete game changer as I'll be able to take it into school, shopping, festivals, Downing Street etc. which is currently impossible, partly due to the enormous weight of the thing!

 

With a huge amount of teamwork (and my sister Candice's Usain Bolt impression), we managed to secure an amazing position on the front row in the centre for the last time this summer. It was an amazing way to end the holidays, with all of our favourite bands/artists performing just metres away - the magic of that never wears off! 

 

 

6 concerts, 6 weeks, 6 front rows!

 

Ollie Marland.xo

 

Pixie Lott.xo

 

 Jessie J-mazing!

 

We drove home that night, as being faced with the task of packing up all my machines the next morning as well as battling with the Monday morning traffic was just too much to bare. We stopped for our last McDonald's of the holidays, and had our final after-midnight-feast back at home. Lexi, our Golden Retriever, was so excited to see us after our week away, literally kart-wheeling around the living room with happiness!

 

I'd planned to spend what was left of Monday after I'd got up preparing for the first day back at school, but yeah, that didn't happen - sorting out concert photos takes up a lot of time! I woke up at 06:00am on Tuesday not even a little bit ready, but it had to come at some point I suppose. I've started my two year GCSE course now, meaning that the amount of homework and revision is now going to do nothing but get bigger. I'll do my best to blog whenever possible, but please forgive me I go a bit quiet from time to time. You can always also keep up to date via Twitter if you'd like: @TillyKG_xoxox

 

 

Write as soon as I can,

 

Tilly,xox

 





The Festival Season Rolls On!

We have now experienced V Festival, and what a weekend it was! After managing to secure such fantastic positions at the previous, much smaller festivals, we were pretty certain that there was  no chance of us getting up close when competing with a whopping 90,000 people! Equipped with our wellies and flowers in our hair - what else could you need? - we made our way to Weston Park.  We arrived in plenty of time, giving us the opportunity to check out the site for accessibility. We decided not to camp this year, but after seeing the facilities, we are seriously considering it for next time! I've never been camping at all yet - the whole 'Glamping' thing sounds rather appealing actually - but I guess all I'd really need is a relatively big tent and an electrical hook-up for my overnight machines and charging my power-chair.  We retrieved our wristbands for the accessible viewing platform just in case it was, for once, in a good position, yet, once again, you'd need binoculars to see anything. We slowly made our way around the arena, checking out where everything was and as we approached the main stage, we realised that there was actually a space on the front barrier! My chair immediately went on to turbo-charge, and sped across the field - it's amazing what you can do when a front row spot is at stake!

We made it!

 

It's quite ironic really because, despite not actually needing to lean on the barrier for support, nothing can beat that feeling when my tiny fingers wrap half way around it, and nobody can move me away!

 

 

 

This festival was quite different from the others as there was more than one stage, and so people were generally wandering about, popping in to see an act, and then moving on again. This was our original plan, you know, just to meander around the stalls etc. but after miraculously claiming such a great spot, there was no way that we were going to risk losing it! Driving at speed across a bumpy field really is necessary at these events if you want a bit of atmosphere as well as a good view, but it's not something that I want to be doing every 30 minutes or so. It can be pretty painful on my neck and so my sister Candice has become expert at holding my head in place as we race along, but hey, nothing worth having come easy, does it? As I say, each of the earlier acts would play for about 20-30 minutes, and then a large number of people would leave to go and see another artist somewhere else. This meant that every time someone finished, we could move in towards the centre just a tiny bit. It didn't seem much at the time, but looking back, we did move a fair way closer! The crowds did start to build as we got to the third or fourth act and, as you would expect, the security team began to feel rather anxious for my safety. I don't blame them one bit, and in actual fact, I'd be worried if they showed no concern at all, but we did manage to convince them that, truthfully with the front barrier beside me I was in no danger of being pushed over. My chair also provides great solid protection if the crowds were to push forward, and my mum, sister, and my PA, Sally, stand behind and to the side just incase - quite frankly to protect others from hurting themselves on my metalwork more than anything else!

  

Day 1!

 

Day 2!

 

 

 

Having a prime spot though often comes at a price, and this time it was the inability to move away for anything, whether it be to fetch food, drink, or even to avail yourself of the facilities (although from what I've heard, that might have been for the best....)! After nearly 12 hours of standing - well, sitting for me - on a field in the centre of England, you're bound to get quite chilly, and as I've said before, this causes quite an issue for me. Driving is hard enough with a cold hand, but having to try and dodge all of the rubbish that's left behind after a festival is a nightmare! Two people have to walk in front of me kicking away all the empties, to clear a pathway, but on the bright side, they say this is a great way of getting the blood circulating again in their legs after their long stint standing. When you do finally reach the car at around midnight, you still spend at least another hour or two queuing for the exit - camping on site was sounding better and better by the minute!

The traffic wasn't too bad on the first night as most people were staying over, and so there was still time to head to McDonald's Drive Thru to collect our compulsory midnight feast. It has now become a tradition that we have a well-deserved McDonald's after every concert, as we've usually had hardly anything to eat all day! When we arrive at home it can be anything up to two 2 hours before I'm actually in bed, by the time I've sorted everything out and then hooked up to my machines. As well as my ventilator, I have a SATs monitor that attaches to my toe and measures my oxygen levels and heart rate overnight, and it alarms if they rise above or fall below a certain number.  I've been using all my machines for about 10 years now, and so they really don't bother me, in fact, I kind of miss them if they're not there!



 My machines

 

We woke up early again the next morning and left the house at around the same time, praying that we'd be as lucky with the traffic as we were the previous day. Thankfully we were, and made it in even better time as we knew exactly where we were going, unlike before - in our defence, it doesn't help that one of the important signs directing us to the venue had fallen down! All of the staff on the gates and in the car parks etc. were great and let us park in the same spot, making it really easy for us to head right on in. After such terrific luck with our position on Saturday, there was absolutely no way that we'd match it a second time. We didn't dare to even hope... Whilst wobbling over the grass past all the delicious food stands, we once again spotted that there was space on the barrier just one or two people across from where we were before, and once again, my chair grew it's wings, and it flew! I can't really put into words that feeling of having achieved what we so desperately wanted to achieve, but I suppose it's just a mixture of relief, satisfaction, and a huge amount of joy. All the acts over both days were amazing, but also quite different to what I've seen before. Each and every one of them had so much talent, and the whole event showed me just how much I want to be involved with the music industry in some form or another in the future.

Front row, bottom left!

To any wheelchair users looking to get a front row spot at a concert/festival, I would say that there are four main things that you need: preparation, commitment, determination, and resilience.

Before I go, I would just like to say a HUGE congratulations to my sister, Candice, who yesterday received her GCSE results, and has achieved an astonishing ten A*s and one A!!! She certainly deserved it, and we are all extremely proud.

My gorgeous sister ready for her prom!

Write soon,

Tilly,xox

 

 

 

 

 

 





 

My Chair Really Can Fly!

Ever since last summer we have been counting down the days until the festival season began again, and on Saturday it finally did! Before we left though, a photographer came from the Daily Mirror  as they were doing a follow-up on some of the previous Pride of Britain winners. That was an amazing night, and I'll definitely write all about it some time soon.



Candice and I all ready to go!

 

We were really lucky last year at Total Access Live to be able to get a spot very close to the front ,but we never expected to even nearly match that for the second time. At most concerts there is a designated platform for wheelchair users, but it's that far from the stage that it's practically in the next county! I understand that for some people it might be good to be away from the lights and loud noises, and of course I wouldn't want to block the rest of the crowds view, but you honestly need binoculars if you actually want to see anything! We arrived a few hours before the gates opened, and sat at the front of the accessible queue with our stress levels rising uncontrollably until it was time to go in. They let the VIP's and the wheelchair users in a few minutes early to avoid the crush, but it was just enough time to have a little head start.

The distance from the queue to the stage...

 

As soon as we were given the go ahead I, along with my PA, Sally, headed for the stage with my chair on top speed - I never knew it could actually fly! It was so touching when the people that had arrived before us were cheering me on and saved me a space on the barrier. I couldn't believe that we'd made it to the front ahead of a crowd of 15,000!

 



 So stressful, but so worth it! (Front row, middle right)

 

I don't know what I'd do without my chair at these concerts, because if I couldn't go up and down, I wouldn't see a thing! I have an Etac Balder, donated by Caudwell Children (http://www.caudwellchildren.com/)  and it really is out of this world. It's quite entertaining because some of the singers/bands on stage spend a long time looking down at me and the chair in the crowd, just trying to work how on earth a wheelchair user has got so close! My Neater Arm Supports (http://www.neater.co.uk/) are also fantastic for festivals, as without them, how would I be able to join in with my arms in the air and clapping along?

 

There were lots of great acts this year, but Union J and Ollie Marland had to be my favourites. We first met Ollie at the opening of The Donna Louise Children's Hospice's (http://www.donnalouisetrust.org/) charity shop in Stoke in 2012, and since then we've seen him at a fair few different events and concerts.

 

Me and Ollie Marland, Dec. 2012

 



He has been so genuinely lovely every time and, as well as being extremely good looking, he's very talented. He is becoming more famous by the day, having just signed his first record deal, but none of it has stopped him really caring about his fans, and he goes out of his way whenever he can to ensure that each and every one of them feels special. We're also so privileged to have got to know his biggest fans, his parents, who have also gone out of their way to make magical things happen for Ollie's supporters.

 



 One of the best moments of my life when Ollie mentioned me on stage!

 





After staying until the very end and then having to bump my way back across the field and negotiate my way around the mountains of litter, it must have been at least midnight by the time we got home, but we were still up at the crack of dawn the next morning to get ready for OsFest! This was a much smaller festival, but they still had some really big acts such as Luke Friend and Union J (again, I know!). From the event organisers to the security and parking staff, everyone was so kind and helpful which really does make all the difference - we even got a VIP upgrade! My Mum and Sally were able to relax in style, whilst my sister and I were frozen to the barrier, determined not to move until the very end. We amazingly managed, after bumping over the field on turbo charge again, to squeeze onto to the front row, smack bang in the centre!

 

My amazing chair working it's magic! (http://www.etac.com/uk)

 



More people started to arrive as the time for some of the bigger acts neared, but the wind also began to pick up rather rapidly too. During one set (Elyar Fox for those interested), the whole of the crowd had to be moved to the other end of the field as there was a high risk of the stage blowing down onto us all. There were some rather angry people as you can imagine, as some had camped overnight just to get a spot near the front. We were really disappointed obviously, but kind of accepted that we weren't going to even get close to where we were before - that's if it continued at all! I completely understand, and it wasn't their fault that there happened to be a passing hurricane on that day! All I can say is thank you so much to the lady that upgraded us!  Because we were VIP's we were able to sit in the tent and try and warm through whilst the people in charge came up with a plan B. I can't drive at all when my fingers freeze which is kind of an issue, and so it was pretty handy really. This luxury also meant that we were that little bit closer to the stage, giving us an advantage if the wind were to eventually drop and the concert to continue.

 

Fortunately, it did in the end, and Candice  and Mum were miraculously the first to get back to the barrier at the front - they are very proud of themselves for that. The girls around were so understanding when they heard that my Mum was only saving the space for me, and when I eventually rolled up they all stepped back and made a corridor for me to squeeze through. The concert was great after that - despite the weather -  and we were recognised by Union J (aaahhh)! The rain really didn't matter because, as long as you keep all your electrics in your chair dry, it really makes no difference. Having said this, there was a very kind person next to me who held up an umbrella in between acts to whom I am very grateful.

 

Here are just some photos of the highlights from the weekend:

 

Union J - Total Access Live!

 

You can just about see us on the front row!

Photo credit: Signal 1

 

 

Union J - OsFest!

 

Luke Friend - OsFest! (He then looked down and put his hand on my arm!)

Photo credit: Aquarian Photography

 

The countdown continue and I'm just polishing my wellies - yes, I do wear wellies - all ready for V Festival!

 





Write soon,

 

Tilly,xox









Week Two of The Summer Hols!

Week two of the summer holidays began with a trip to the Orthotics department at the hospital to have my foot splints re-cast. Ever since I was little I have worn hard, plastic splints on my wrists and feet to try and slow down the deviation that comes with my condition, and every year or so I go in and have them re-cast using Plaster of Paris. I used to clear the waiting room when I was younger with all my screaming, but it really doesn't hurt at all. It was just 'fear of the unknown' I guess. They aren't exactly the most comfortable things in the world, but as long as my feet stay 'shoe-shaped', I don't really mind (I'm rather fond of my shoes to say the least). They do rub sometimes, but they're nothing compared to the spinal braces that I wore up until I was about 8 years old, which encased me in even more hard plastic from my shoulder blades to my pelvis - now that was sore!

 

    



 My spinal brace and foot splints.

 

 Another part of my disability (SMA) is Scoliosis, where the spine curves and can eventually compromise things like the respiratory system, and so a brace is used to try, again, to slow it down. When you reach a certain point, it's time for spinal surgery. I have a scar from the top to bottom of my back from when I had rods placed either side of my spine in order to try and straighten it all out - it honestly transformed me. They had to be extended in surgery every year or so to make sure that my trunk could still grow, as I was only young and small when the procedure took place.

I know this looks quite scary, but minutes later I was sat up chatting and eating McDonald's!



In September 2013 I went down to theatre, one more time with feeling, to have my rods replaced and then fused to my spine. The two main operations (the first and the last) take about 8 hours, and so it can be a long day for my Mum and Dad - time flies for me under general anaesthetic! I had begun to lean to the left again over the last 12 months, the name 'Leaning Tower of Tilly' slowly making its return, and so my fabulous surgeon decided that it was time for me to become the Eifel Tower. I had some pins placed around my pelvis at a diagonal from the bottom of my rods - et voila! - if you were to look at my spinal x-rays now, the Eifel Tower you would see.

The past few days have been spent with some friends, and so it was lovely to see them and have a catch up. Lexi (our Golden Retriever) loves everyone she meets, and so having three relatively small children in the house, all desperate to play and cuddle her, is heridea of Heaven. She is beautiful though, and so gentle too. We went down the route of Dogs For The Disabled, but soon realised that it just wasn't for us, and so we found Princess Alexis (she allows us to call her Lexi) - she is perfect.

Our Princess Alexis.



Lexi absolutely adores Rudyard Lake, and so she comes along with us every time we go. We took our friends there, as Rudyard Sailability had a group down called PHAB (Physically Handicapped and Able Bodied) Camp, and we were going to help out. The people who volunteer on this Birmingham-based camp are all fabulous people, and are they're there for no other reason than to make sure that these young people had the best time possible. Our friends were completely and utterly astounded and inspired by their energy, enthusiasm, and commitment, with their young boy saying that when he grows up he wants to become a PHAB volunteer - that says it all in my opinion.

Every evening we'd come home to a delicious meal, lovingly prepared my Dad, who I must say is a most excellent chef. He is that brilliant in fact, that my sister once told Gordon Ramsey at the Pride of Britain Awards that our Dad was the best chef in the world - he agreed with her straight away of course, but then whispered something into my Dad's ear, and you can imagine what sort of thing it was. I don't know what we'd do with out him, as he's not only Head of Catering, but also Head of Maintenance, Head of Ironing, Head of Food Shopping, Head of Technology-Fixing.... the list goes on and on! He tends to look after things whilst my Mum is helping me with various things, and so along with my sister Candice, and Lexi of course, we all make a pretty good team!



Daddy's little girl.x

One last thing before I go, sort of a 'Tip of The Week' thing really, is that my new phone case arrived in the post a couple of days ago, and it is ideal for someone like me who has a tendency  to drop things. It comes with a detachable chain so that I can wear it instead of trying to balance it on my knee whilst driving which, let's face it, was never going to work.

New Phone Case!

 



I can't have it in a bag as, in an emergency or just in general, I wouldn't be able to reach it, dig it out etc. and so I thought I'd share it just incase it would be of any use (there are other styles available, but it wouldn't be complete for me without a little bit - okay a lot - of bling). It'll be especially handy over the coming week, as the festival season finally descends upon us! I'm sure you'll here all about them in my next blog...

Write soon,

Tilly,xox

School's Out!

Hello! I'm Tilly, I'm 14 years old, and I have a genetic condition called Spinal Muscular Atrophy (SMA) which means that I have very weak muscles, and so am a full-time, powered wheelchair user. I also rely upon a night-time ventilator to support my breathing. One of the first things you need to know about me is that it doesn't stop me doing anything, and with the right support; the right attitude; a van load of equipment; and of course, my amazing chair; the sky's the limit! I decided to start blogging because, for one, I'm interested in writing, and two, I just thought that it would be good to share my experiences, and give my thoughts on the places I've been to and things that I've seen and done.

My wheelie-cool chair!

http://caudwellchildren.com/



It's now nearing the end of the first week of the summer holidays, and I thought that this might be a good time to begin writing about all of my adventures passed and to come. I really do enjoy high school, but it got so busy towards the end of term, what with various extra-curricular things - and of course, homework - that I just couldn't find time to fit it in! I've spent the past week having a general sort out really, making sure that everything is out of the way for the many festivals we have planned over the next few weeks. Music is a big part of my life, and so I try and get to as many as possible - I absolutely love them! I've also spent a lot of time playing the keyboard and song-writing, as I decided with my teacher that I should right an album with at least 12 songs by Christmas! I'm just coming up with the basics for now, and then I'll play around with them a bit later on.  She is a fabulous teacher, and I've come such a long way since having her. She's one of those people who is clearly so passionate about what they do, and immediately inspires others to do the same. I used to play until I was about 6 or 7, but without my arm supports, it was practically impossible. Without them, I can barely lift my hands off my lap, and so the difference is out of this world! You'll see over the next few months just how much they really have changed my life.



My Neater Arm Supports in action!

http://www.neater.co.uk/

 



My mum and I also popped into the Caudwell Children offices on Wednesday for a couple of hours volunteering. I usually go and do a bit of work on filling in data and spreadsheats, but this time I was given the opportunity to help out in the PR department - I'd said that I had an interest in writing, and so they set me up to write my first ever press release! In my life I get given a lot of 'fake jobs', which are things that don't really need doing, but I get given them anyway to keep me happy. I'm quite used to it, and so I just that this was another one - we all need to get experience somehow anyway. I'd just come to the end of it when the head of the department, Ben, said, "That's great Tilly. We'll get it sent off to the media and see what happens, but in the meantime I'll definitely get it up on the website etc." I had no idea that it was actually a real job! I don't exactly have a huge problem with fake ones, but it is nice to be able to do something that's worthwhile and actually needs doing.

On Saturday, my Mum and I went to the Leek and District Show as a part of Rudyard Sailability. This is a charity local to us that offers sailing for those who live with disability! I personally love this motto, as it shows that these people aren't just doing the bare minimum in life, they are truly are living it! I don't really see myself as disabled because, well, I am able to do things - in fact, I've been lucky enough to have lots of opportunities to do some really great things. Like I said earlier, if you put your mind to it, anything's possible. The term 'live with disability' is also great because it includes everyone that's involved in some way or another. Quite often, something can be centred solely around the person and their main carer, and then completely  disregard anyone else. I first went out sailing when I was about 3 years old, and we've been a part of it ever since. My sister and I have both been put through the RYA course, and I first went out solo when I was 7! I sail with a fingertip control (a mini joystick just like the one on my chair), but I'm  hoping to learn to use Sip and Puff (using your mouth to control the sails and steer). We were at the Leek Show, not only to raise funds, but to thank the public for their continued support throughout our 8 year battle to build a brand-new, fully accessible boat store - hopefully the end is now in sight! It's always a great event, but the beautiful weather really was the icing on the cake!

'I am sailing'(aged 7)!

http://rudyardsailability.org.uk/    http://www.rya.org.uk/programmes/ryasailability/

 

My sister, Candice, arrived home Saturday night after a week-long trip to France on work experience. I'm hoping to be able to do something like this in a few years, as languages is another area that really interests me. I'm looking forward to taking part in the school exchange, but the logistics of actually staying in someone's home may be slightly tricky. Of course we wouldn't let it stop us completely, but not being able to physically get through somebody's front door may be a tiny issue that we'd have to address. My school are great though, and so I'm sure we'll figure it out somehow. I totally believe this, as I was fully included on the trip to the Belgian Battle Fields - actually, the accessible coach was £200 cheaper than the one that they were going to use, so I guess I did them favour really! By the way though, this is very rare.



Belgium 2014 at the Menin Gate, Ypres.

I think I'll leave it here for now, as I spent most of yesterday just watching a film and 'chillaxing' really. We have a busy week ahead of us with various appointments, and then some friends coming to visit, and so it will probably be next weekend before I can write again. If you do have any questions, please don't hesitate to ask, as I am more than willing to answer as best I can. If you'd like to, you can also follow me on Twitter: @TillyKG_xoxox

Write soon,

Tilly,xox