Here are the tributes that were read out during the celebration of Joshua’s life on 25th July. If you read out a tribute and it is not here, please feel free to add it.
Celebration of the life of Joshua Seville
Loving memory of a wonderful Son who inspired many.
Celebration of the life of Joshua Seville 
Darling, darling Joshua,
I hope you know how special you are, and how so very proud we are of you.
We never told you, but when you were born, the doctor’s were never sure whether you would be strong enough to survive. You battled on for a few months and we decided to give you your tracheostomy and ventilator to give you the best chance we could, which you have never questioned throughout all of your life. After that, you never looked back. The ventilator meant that you didn’t have to worry about breathing and you could concentrate on being a little boy and having fun.
Throughout your life, you have accepted your condition and never said “why me”. In fact, you have never seen yourself as being different, but you recognise that you can’t do as much as other children. You always have such a thirst for life and look at what you can do, rather than what you can’t.
Every milestone that you ever reached was all the more special because we never thought that you would reach some of them. You learned to hold your head up and then sit up at about 18 months old and that was a moment of joy to see you being able to sit on the floor with other children. You particularly enjoyed sitting on the windowsill when you were young and you still say that you fell off one day, although we are sure that you didn’t.
You have achieved so much in your life and you will never find parents who are more proud than us. You have succeeded brilliantly at school, receiving many awards along the way. You have won the letter writing competition and done amazingly well in your SATS tests. Exams were always going to be hard for you, because of your weak muscles, but like everything else, you tackled it head on and give it your absolute best.
One of the things we loved to see was when you learned to drink and then eat. Eating is a pleasure in life and for someone who cannot walk, or run or go on playground rides, eating opened up a whole new world for you and gave you some social inclusion. You could eat and drink with friends at parties and feel like everyone else which must feel wonderful to you. The only problem is that you developed a taste for all things sweet and smarties became your absolute favourite.
You have suffered many chest infections throughout your life and your guts and determination were never more obvious than when you battled through swine flu. That was so hard for you to recover from, but, typical you, you were back at school within 5 weeks.
Your biggest achievement, though, was surviving, and thriving, until the age of 11. We never told you this either, but only 1% of children with MTM reach the age of 10 and surprise surprise, you surpassed that age, with your strength of character and your zest for life. What a little miracle you are.
I always call you my hero, to your face, because your attitude to life is amazing. You enjoy every single day and we can honestly say that you have never complained about anything you are not able to do. Your condition never bothers you, you never moan because you have a wheelchair and a ventilator. In fact, the only time you ever moan is when you have to stop playing, when it’s time for bed, or a bath, and when we say you can’t have any more smarties. You are a true inspiration to us and I hope you realise how many people you have inspired who now see that anything can be achieved with a little determination.
You love your Snapdragon wheelchair because it is very fast and you quickly learned to drift and found a way to create your version of a handbrake turn. You love the mossy patch at the side of reception at school, where you do your spins and you love it when it is icy, although you have been told off a few times for wheelchair skating.
We have visited some brilliant places and we always tried our best to find accessible things for you to do. You loved Legoland, Cadbury World, surprise surprise, the treehouse at Alnwick Garden and you had an amazing time when you recently went disabled skiing. Remember that time we made you go on the log flume because we thought you’d like it but you hated it and cried all the way through.
You absolutely love books. No other person on earth can love books more than you. You have chest physio 4 times each day and you use this time to absorb as much information as you can. Although you do enjoy fiction, your real passion are information books. You often get me to ask you a question about anything in the world and you always know a little bit about pretty much any subject imaginable. Although you are wonderful, we do call you strange as we don’t know any other child who reads books about the highway code, first aid and one of your favourites was “household hints” where you read how to remove stains. And if you enjoy a book, you will read it over and over and over again. We don’t know anyone else who does that.
You are a big Pokemon fan and you love Sonic, and Shadow and particularly love creating role plays with your internet friends on Moshi Monsters. We often hear you chuckling when you are typing away on your computer. You also love science, computers and calling Dad an idiot.
That brings me to your sense of humour. You have a sarcastic wit, which I think you get from your Dad actually, but I can honestly say that you make us laugh every single day and often have us crying from laughter. You love looking silly, in fact the sillier the better as you love people’s reaction when they see how daft you look. Me and your Grandma’s have often been forced to make the most difficult costumes. The hardest one was the spider one where you had fluffy material and we made 8 giant legs coming off your body. Not easy to do for someone in a wheelchair. And do you remember the time when you insisted going to a hospital appointment dressed as a polar bear with a big fat belly. You just wouldn’t wait until you got to school to get dressed.
You like everything unusual. The weirdest shape stone will catch your eye, you like unusual shapes and if you have your face painted, you would choose a mandrill, rather than just a monkey. And if you are choosing an outfit, the brighter the better.
You have some fantastic friends who I know you love playing with although you are also happy playing by yourself or with online friends. You play with children in different years at school and you just love being on stage in plays , being the centre of attention, as you are amazingly confident and not afraid to speak in front of others.
PE was a typical example of where you gave anything a try, even if it was physically very difficult. You have tried yoga, cricket and even apparatus, so no-one can ever say that you were never prepared give 100%. You were asked questions in court by a tribunal judge and you handled that we such maturity and gave answers with such care and thought. You are unique, Joshua. There will never be another person quite like you.
You will always be my sweetheart, my darling, my gorgeous boy and my chicken chops. And Dad will always remember you as fatface. You always sign my cards with all my love and Dad gets love and punches. I think I got the better end of the deal.
We can’t tell you how proud we are of you. You have thrown every ounce of energy you have into your life and achieved some wonderful things. We never thought that anyone with weak muscles could have so much energy. We always say that you are like a Duracell battery, you just keep going. Sleep is such a complete waste of playing time to you, so you would go to bed late and get up early ready to start a new day. You are not a disabled child, you are a child and you, quite rightly, dedicated your life to having fun.
If we had known you under any circumstances we would be privileged. But what an honour and a blessing to have been your Mum and Dad. How lucky are we that you were given to us.
Your condition has made us cry sometimes but you have made us cry with laughter nearly every day. Thank you for keeping us entertained with your massive personality. And the way you have handled your life is truly inspirational. For a little boy to have been as brave as you is absolutely amazing. Thank you for sharing your life with us but we have to tell you how desperately we miss you.
Our hearts are broken and we really don’t know how we are going to manage without you. The house is too quiet and I wish I had one more day to complain that you never shout “Dad”.
Already I miss your kisses, the feel of your skin and the silly way we say goodnight to each other.
We love you so very much, you are the light of our lives. Words are not enough to express the depth of our feelings for you. You are a special boy and we can’t bear being without you. We are empty inside.
But you have no pain now and you’ll never suffer again and we are grateful for that. We won’t say rest in peace because we can imagine you racing around in your wheelchair in Heaven, causing havoc.
Keep watching over us, we need all the help we can get to carry on without you. We will continue to raise money for the trust to help find a cure and perhaps you can point the scientists in the right direction.
We will miss you and talk about you every day forever. Have a wonderful new life, my darling, and we’ll all be together again sometime in the future.
All our love
From
Mum and Dad
“Joshua, I want to talk to you and everyone here today about how you changed our lives (especially mine), when you were born. As a family, we all worried how your life would be with the myotubular myopathy condition, but none of us need to have worried, because, once you came out of hospital and your Mum and Dad brought you home, you surprised us all the time with things that you would do and how much stronger you got.
You gave us all so much love and in your short life you lived and loved every day and did so many exciting things.
When you were small, you and I would play games together like uno, fish, eye spy, hangman and more. We would also read books together until you started to read the most boring books ever like instruction and science books. It was then that you learned unusual words and you would say them to me. I didn’t know what the words meant, nor could I spell them. There was so much knowledge in your brain that you baffled me with it. Remember the time that you did an experiment for me with cornflour? I only thought cornflour was for thickening gravy but you showed me what happened when you mixed it with water and how it could be liquid and solid. You blew me away.
Then as you got older you liked playstations, wii, DS and all computer games and you would ask me if I would play a game with you. I knew nothing about computer games and still don’t, but I would give it a go with you. I would try and win you on a car racing game (you knew I never would) and after about 3 times trying to win you, you would give it up and go playing on 1 player. I knew then that it was time for me to sit down, but never once did you say that I was hopeless (but you knew I was), so thank you for letting me try to play.
Joshua, you had a great sense of humour and told so many good jokes which made us all laugh. You also knew how to brighten up anyone’s day. The biggest thing you ever taught me was to never feel sorry for myself. Whenever I moaned about the weather, little aches and pains, or even a cold, I would always tell myself to get on with things and pull myself together.
Now all our lives are going to change again and not for the better. I can say from the bottom of my heart that that mine will never be the same again.
So, Joshua, what I want to ask you is shall we both make each other a promise ? I will promise to try to look after your Mum and Dad the best I can, and you promise to learn more jokes, games and new words for when we both meet again.
So I will now say GOD BLESS and I will see you later.
Never forget that we all love you so much and will miss you even more.
Bye for now, Sweetheart,
Grandma Seville”
XOXOXO
Do not stand at my grave and weep;
I am not there. I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain,
I am the gentle autumn rain.
When you awaken in the morning’s hush,
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there, I did not die.
To Joshua
Standing here still doesnt make it feel real,
I just cant put into words how losing you makes me feel.
I’m so sorry I was thousands of miles away,
if I could turn back time I would do anything to be with you on that sad day.
I just wanted to hold your hand and stroke your cheek,
and give you some strength as I knew you were weak.
Joshua you are my little ray of sunshine on a cloudy day,
you always made everyone smile with your silly little way.
You were always happy and never complained,
even if your cheeky mum borrowed your orange coat to wear in the rain.
You were a little fighter we all know thats true,
no matter what life’s thrown at you, you always came through.
Your little body just got tired and needed to rest,
but we all know we only lose the best!
Good night my little ray of sunshine, I love you and miss you so much Joshua, forever and always xoxoxoxoxoxoxoxoxoxoxoxoxoxoxox
It is with great pride and even greater sadness, that I am standing in front of you all today, but Joshua’s life must be celebrated. He would’nt have wanted it any other way and his special personality always shone through in everything that he did.
When my wife Gail and I first met Carol and Dave 13 years ago, when we where witnesses at their weddind in St Lucia, I would never have thought that our friendship would lead us to where we are today.
I am going to try and give you all a very small insight of our very fond memories of this special wee boy as there are just far too many to recall them all.
Every minute I spent in his company was better and more special than the last. From the time we went to Alnwick Gardens and Joshua told me to stand on this specific spot, only to be soaked with a jet of water, then again when we visted the Magna Centre and again Joshua telling me stand in another specific spot and apparently it was the only spot where he could soak me with a huge water gun. There seems to be a recurring theme going on here and these sort of jokes where right up Joshua’s street.
I could also never beat him at his driving games on the Wii or the Playstation however hard I tried and I just had to give up, and give into a superior driver, and his skills no doubt honed by watching his Dad driving and watching Top Gear.
Joshua also used to frequently remind me that I talked funny, I think he was probably right.
Joshua has made me cry with joy and sadness in equal measures, but my overriding memory of him will always be that he was the bravest wee boy that I have ever had the privilege to get to know, and I felt humble when I was with him and fortunate that I have played a small part in his wonderful life, and I know that in my lifetime I will never meet another quite like Joshua.
Over the last twelve days, as I tried to think of the words to describe Joshua, the same phrase kept coming back to me – a ray of sunshine. That is what he brought into my life, and my family’s life. We met Joshua exactly four years ago this month, and it has been a joy and a privilege to know him, and to know him as part of that mad, funny, loving, thoughtful and perfect team of Joshua, Carol and Dave.
They were kind enough to let us into their lives at a time when we were a devastated family, and it is no exaggeration to say that Joshua’s ray of sunshine was a huge part of our ability to see meaning in life again, especially for our daughter Sophie who promptly adopted him on first sight – for all those wonderful characteristics of his of being funny, cheeky, determined and lovable.
So many people through the ages have tried to define perfect love – poems have been written and songs sung but it remains an elusive thing. When you see it in life, it’s an honour and a privilege to witness. Perfect love is uncomplicated, straightforward, has no expectations of those it loves, and lives and loves in the moment. We all saw that perfect love given and received by Joshua and how blessed we were to have known him.
I know that I will take that ray of sunshine with me forever.
My friend Joshua
Me and Joshua laughed all the time. Even when we wasn’t suppose to. Like when it was our School Christmas play, Joshua made a funny face which made us both laugh. Joshua’s Mum caught us on camera.
Joshua was really good at playing tig. He always caught me. He was super fast in his wheelchair. Joshua would let me stand on the back of his wheelchair and then he would spin me around and around. It was fun.
Joshua’s favourite colour is orange, he loved playing on club Penguin and he love’s mice.
I will never gorget my best friend Joshua.
I met Josh when I came to St.Georges. To me he was no different to all the other new children I met. I only saw him at break because it was a split class. He loved me chasing him around. In year 2 he got his speedy new chair, he kept spinning round in circles and I was so scared he was going to fall over. In the holidays we used to go to Todmorden Park, I would go on the back of his chair and race Ben on his scooter. We lost so he spun around to throw me off. Other times we’d stay in at his house or mine. One time I got cocky on the wii so I had to feed him Smarties all day. He could be trouble in school if I told him something wrong on his work he would hit me, laugh and change it. We would swap books but I couldn’t keep up with him but I do suspect he was skipping pages. I will remember Josh for Pokemon, Smarties and a great friend.
What can I say about josh apart from ouch every time he ran over my foot… then he would go backwards on it. Josh has been my friend for over 7 years, we were there for each other through the good times and the bad and made each other laugh everyday.
In the play ground there is a ramp and josh would make his wheels spin that fast that smoke would come from the back of them, one day he even dinned it… it was so funny.
Other times he would speed up and down the corridors and get in trouble by the teachers, but then he would do it again the next day. One day when he thought no one was looking he was drifting in the hall… but then Mrs. Swindell caught him, and put a stop to that.
One of his favourite games was when me and Jordan would touch him and say beep, beep, beep and Josh would say ring ring, he thought he was a mobile phone he loved it!!!!!
When I was asked to say something today I was so proud because Josh is my best friend and I would do anything for him.
When I think of him it just makes me smile because I remember all the great memories me and Josh had and I would not change one bit.
‘Josh’ you will always be my best mate!!!
Joshua you inspired me with your sense of humor and filled me with happiness right now i think about you and how you managed with all that pain yesterday i fell down the stairs and cut my hand open just think of how many smarties you could eat in heaven right now you are my best friend that i ever met i will not ever forget
josh hill