Thursday, 29 November 2012

A Christmas Dream Come True....

Monday 3rd December will be a very exciting day for me, as it is the day Christmas Gibbons music and vocals by LA musician and composer Tom Harrison, words by, yes incredible as it seems, me, Adam Bojelian is launched on iTunes to raise money for Children's Hospice Association Scotland (CHAS)

You can preview it here but do please tell the world to download it from iTunes from Monday, as 50p of every download goes to CHAS and help children who like me, live with very serious, life threatening and life limiting health problems.

Talking of which I'm in hospital at the moment, so I've asked mum to tell you the Christmas Gibbons story:-

Dreams Do Come True - The story of Christmas Gibbons, as told by Adam's mum Zoe:-

With a Brit Writer’s Award; a gold Blue Peter badge; a Young Scotland “Rising Star Award” and this year’s Young Scot “Arts” award, all to his name,  as well as letters of congratulations from the Queen, the UK Prime Minister and Scotland's First Minister, I didn’t think my 12 year old son Adam could surpass his amazing achievements.  But from Monday he will also be able to add lyricist to his precocious cv, when Christmas Gibbons, the wonderful poem Adam wrote in 2010, is launched on iTunes with music and vocals by LA based film and T.V. musician and composer Tom Harrison and animation by Jess Connell and Nikki Godley 

As those of you who follow Adam’s poetry blog and his twitter feed will know, Adam’s creative achievements are all the more remarkable in view of the fact Adam lives with very complex and serious health problems and severe physical impairment. Adam is currently in hospital.  He has been in four different hospitals in the UK in the last few months.  Indeed he has spent more of his life in hospital than out,  including more than half his Christmases.  Without question, a difficult life for a child, but at the same time the only life Adam has ever known and one our whole family have always been determined to make as happy and fulfilling as the restrictions of Adam’s health allow.

So how did a 12 year old living with more far more challenges than most, come to be the lyricist of a potential Christmas hit?  The story begins when Adam was a baby.  After a difficult start, Adam spent most of the first 18 months of his life on ward G1 at Southampton General Hospital in Hampshire. Ward G1 was then and from Adam's brief revisit this summer, it appears still to be, a very special place.  It is a hospital ward you definitely want to find yourself in if you are unlucky enough to have a baby with serious health problems.

The doctors and nurses were kind, compassionate, supportive, and informative, as I said recently elsewhere of another hospital, wrapping our whole family in a huge blanket of support and yes,  I would even say love.  It was also a place of laugher and fun.  To this day, I believe the care, support and most importantly the way the staff treated Adam as a much valued child and recognised, even in the first months of his life, signs of early skills and abilities, laid the foundation of Adam’s achievements now reached, at the eve of Adam's teenage years.

While still in Hampshire, Adam made his first efforts at blinking to communicate.  I was asked earlier this year to write an article for “Special Children” magazine on how Adam developed his blink communication. I posted the article on Adam’s poetry blog and you can link to it here.

Adam has also told in his blog of his love of books and poems from a very early age, especially the joy he gets from visiting the Edinburgh Book Festival, something he has done since the age of 18 months, missing only one year because he was in hospital for the whole of August.  Adam has never been able to run about; climb trees; play sport, things many boys his age take for granted.   His physical abilities now are limited to, when he is well enough, turning his head and blinking.  Instead, Adam’s life has been full of words, poems, stories, books; audio CDs and downloads.  Adam has always listened to stories and loved them. Paddington Bear; Maisie (the Scottish cat not the mouse); Dr Zeus; Roald Dahl; C.S. Lewis; Harry Potter; Lord of the Rings; Spy Dog; Astrosaurs; Lucy and Stephen Hawking; Charlie Fletcher and current favourite Michael Morpurgo are just some of the many books and authors that have brought joy, excitement and childhood pleasure into Adam’s life.

Adam has, for as long as I can remember, loved playing with words and learning. Reading and listening are his passions.  He has also always loved rhymes and poems and the poetry group at St Mark’s Unitarian Church in Edinburgh was the next stepping stone in the Christmas Gibbons story.  In 2009 we began going to the monthly group as a family.  Adam was the only youngster there, but loved hearing the poems being read and discussed.  One time we were told the “topic” for the next month’s meeting would be summertime. Group members were encouraged to bring along much loved poems to share including, for those brave enough, ones they had written themselves.  Adam and I were choosing a poem or two to take to the group when Adam said he wanted a go at writing his own.  Summer Time was the result.

Further poems followed soon after, some being composed relatively swiftly and some taking weeks and months to complete,with Adam having to take rests and stop and start as his health allowed.

Very soon the recognition started, first the 2010 Brit Writers “Outstanding Achievement Award”; the gold Blue Peter badge (the award Adam’s doctors seem to covert most); then the 2011 Young Scotland “Rising Star Award” and this year the 2012 Young Scot Arts Award.  With Adam as our son we have got quite used to attending glittering awards ceremonies, which have brought so much happiness and joy to Adam and us his parents, as well as wonderful memories to treasure forever.

The flip side to this story is of course that Adam does live with very serious health problems and his future is a very uncertain one.  Like other children living with serious health problems Adam accesses Rachel House run by Children’s Hospice Association Scotland.  Ironic as it may sound, Adam is often too poorly to use Rachel House, so only does so occasionally and with us, at Rachel House’s request, near by “just in case”.  This year he has also enjoyed some visits from the Rachel House “at home’ team, a brilliant initiative as they visit children and young people who can’t get to Rachel or Robin House, either because, like Adam, their health can often be too turbulent, or because geographically it is too far to travel.  Adam loves to beat members of the team at board games when they visit.  Very sick children are often offered the chance to make a wish or for their dreams to come true and earlier this years Rachel House staff asked Adam what his dream would be.  Many children choose trips to Disney parks or similar but Adam’s health makes such a trip impossible. His wish, when asked, was something much closer to home, for his poem Christmas Gibbons to be turned into a Christmas song. 

Adam had written Christmas Gibbons in 2010, as a poem to send to family friends for Christmas.  However, it is a poem that seems to have caught the public imagination.  The Minister at St Marks loved it and decided to include it in her children’s Christmas service that year.  She mentioned this to Unitarian colleagues and suddenly we heard of it being read in churches across the UK and even in Boston, USA, appropriately enough by Rev Gibbons.

One morning I also awoke to a ‘google alert' telling me that Adam’s poem was on the Scottish Government GLOW website, a site providing educational materials and support for schools.  Children are asked to learn the poem as an aid to learning English.

Adam's story of gibbons swinging across roof tops delivering presents for Santa certainly seems to grab the imagination of all who hear it.  When Adam was awarded his Young Scot award earlier this year, it was Christmas Gibbons which featured in the Young Scot film about Adam.

CHAS approached one of the wish making organisations, the aim being perhaps to get Christmas Gibbons performed at one of the Christmas concerts Adam so loves to visit, when he is well enough.  But Adam was once more in hospital and the request did not progress.  About this time, one evening as my husband and I were dithering in the street about where to grab a bite to eat on our way home from the hospital. Kim and Gary Harrison, friends whom we had met while walking Adam's dog Charlie in the local park, happened to pass on their way to the local newly opened Italian and invited us to join them.  It was a meal that was to see the birth or at least conception of Christmas Gibbons, the Christmas hit.  Kim and Gary who have both always taken a keen interest in Adam, asked, as we dined, how Adam was doing. We up dated them on the latest from the hospital and also told them about Adam’s wish.  The magic began as Kim and Gary told us of their son Tom (who we had met very briefly the previous Christmas) working as a composer and musician for the film and television industry in LA.  They were sure he would love to set Christmas Gibbons to music for Adam.  A couple of days later I received a delightful email from Tom, telling me how he had read Adam’s poem Christmas Gibbons and absolutely loved it.  Further emails exchanges told of the fun Tom was having creating the awesome music and recording the lyrics.  Adam couldn't wait to hear it.

A couple of months or so later, Adam was in a different hospital, 50 miles from home and I was staying with him, when an email from Tom dropped into my inbox with a recording of Christmas Gibbons attached.  I knew we wouldn’t be home for a couple of weeks and was eager for Adam to hear “his song”, as indeed I was, as soon as possible.

I had my laptop with me, but couldn’t get a signal in or around the hospital.  I ended up one evening listening to Christmas Gibbons for the first time having down loaded it using the free wi-fi in a nearby cafĂ©.  It was August and the other customers did turn and stare, no doubt thinking I was getting into the Christmas spirit just a little too early.  I held my phone up to my laptop to record the track so that I could play it to Adam back at the hospital without the need for an internet connection.  I rushed back to the ward to play Christmas Gibbons to Adam.  He loved it!  Tom had brilliantly captured Adam's brief to create a  Christmas song that would appeal to all ages, but especially to young kids and a song where children of all abilities could participate, singing, blinking or shaking their Christmas bells.  Adam has fond memories of joining in Rudolf the red nose reindeer at nursery and wanted Christmas Gibbons to have a similar vibe.

Things got even more exciting as Gary found animators Jess Connell and Nikki Godley who, as everyone involved as done, donated all their time and and considerable professional skills free of charge, to produce the wonderful Christmas Gibbons animation. They even managed a cameo role for Adam’s much loved dog and star of another of Adam's poems Charlie.  Once more Adam and I were in a hospital away from home, this time 450 miles or so away, when the animation landed in my email box.

Christmas Gibbons does seem to be born of happy and lucky chances; the chance meeting with Kim and Gary for dinner; the original poem and Tom both having connections to Boston; CHAS being chosen as the charity to support, having been (unbeknown to Tom, Gary & Kim at the time) the charity which had originally been hoping to arrange Adam’s wish in the first place.  Another serendipitous connection is actor Ewan McGregor, who is not only a long time supporter of CHAS but has also met  Tom.  He  heard about Adam, Tom and the Christmas Gibbons, and was quick to throw his support behind the venture.  Ewan says, “It’s quite incredible to think that Adam shares his vivid imagination with us through poetry written by blinking.  I love the idea that Santa is assisted at Christmas by gibbons!  I hope lots of people will download this track at Christmas and help to raise some money for CHAS at such a poignant time of year.

Monday 3rd December 2012 is the big day when Christmas Gibbons will be on iTunes with 50p from every down load going to support the work of the Children’s Hospice Association Scotland.

Enjoy the preview of Christmas Gibbons, but do please also down load it from Monday from iTunes and encourage all your friends, families and colleagues to do the same.  If you have children yourself I'm sure they will love it and I am sure being a parent will also make you appreciate all the more the work CHAS do.  If hundred, thousands, even millions of people download Christmas Gibbons from iTunes, that way, Tom, Adam, Jess and Nikki and everything Gary and Kim have done, and not forgetting Charlie Dog will make this Christmas an extra special one for the Children’s Hospice Association Scotland and all the children, young people and families they support. 

Tom, Jess and Nikki have made Adam's Christmas wish come true, together we can do the same for other sick children. Happy Christmas!

p.s. If you would like to make an additional donation to CHAS, Adam has a Just Giving Page for donations to CHAS, which you can link to here

Monday, 26 November 2012


I am delighted to tell you that with a little help from my friends, well a lot of help really, I have raised £1,1160.15 from my Book Bring & Buy For Bobath Scotland and my Big Name Book Raffle.

So thank you to Michael Morpurgo for donating a signed copy of War House, to Ian Rankin for donating signed copies of Set In Darkness and Dead Souls and to Clare Balding for donating a signed copy of My Animals and Other Families.

Thank you also to everyone who donated second hand books for the sale and everyone who purchased tickets for the raffle or bought books.  A special thank you to the very kind gentleman who donated £800 and the very kind gentleman who donated £50.

Unfortunately I was to poorly to attend the sale but thanks to all my family and friends who worked so hard to make the day a big success.

If you want to learn more about the brilliant work Bobath Scotland do, take a look the blog I wrote last year when I visited for a block of therapy.

Although I missed the sale, I really loved working with mum on this fundraising project and I already working on something new and very exciting which hopefully you will hear about very soon.

Monday, 15 October 2012


I have been doing a project on myths and legends. Learning about ancient myths and old and new heroes.  I've learnt about creation myths, particularly the chinese myth of Pangu.I have also made up a creation myth, so thought I would share it with you.


In the beginning there was darkness and silence. Out of the darkness and silence there was a big multicoloured flash. A flash of blues, yellows, reds, greens and even colours you can’t imagine.

Over billions of years the multicoloured ball of colours split. The blue became the sky and the sea; the green became the fields and the forests; the brown became the earth and the mountains; the white became the snow and the ice; the yellow became the sunshine and the sand; and the red was kept for very special things like  reindeers’s noses and robin’s breasts.

The first men and women were created from colours, some brown; some white; some pink; some a beautiful blend creating beautiful people. Little droplets of colour created babies.  Animals were also created, grey for elephants; orange and gold for tigers and lions; brown and white for monkeys; black and white for zebras and penguins; mulitcoloured birds and fishes.

Every colour was perfectly placed, there was no pink elephants; no green people; no red snow; no blue sun or yellow moon. A beautiful world had been created.

(c) Adam Bojelian 2012

Monday, 1 October 2012

Doing My Bit!

I haven't had the best of years healthwise, infact I seem to be doing a tour of the UK's hospitals.

However, one thing that has kept me smiling, when I have been feeling poorly is my fundraising.

I like fundraising, especially doing it in fun ways and especially when it raises money to help other boys and girls.  I also like to show people that I can help others just as much as other boys and girls can.

I have three fund raising projects on the go at the moment.  You may have read about my Trike Ride For Kindred.  I am delighted that following a really generous donation of £2,000 by a very kind man who had read about me, I have reached my target of £5,000.  Infact I have exceeded it as I have raised
£5,970.00.  I hope this will really help Kindred, who provide lots of help and support for families whose children have disabilities.

The weather and my health have both been so awful that I haven't yet been able to complete my mile ride on my Trike around the meadows.  But I am determined to complete my ride as soon as I can, and who knows I might even raise some more. I think I need to see if I can complete my ride in the Chris Hoy Velodrome, as it is warm and dry in there!

My second fund raising project is for Bobath Scotland. I wrote about my visit there last year in an earlier blog.  They provided therapy for boys and girls from across Scotland and I wanted to help them keep up their good work.  As I love books I am holding a Book Bring and Buy for Bobath Scotland.  I am asking people to bring along books they have finished with and to buy some "new" ones, with all the proceeds going to Bobath Scotland.  The Book Bring & Buy will be at 11am-1pm on Saturday 20th October, 2012 in St Mark's Unitarian Church, Castle Terrace, Edinburgh, EH1 2DP (off Lothian Road).

I have also asked some famous authors to donate sign books to raffle at the sale.  I was so excited when I received a sign copy of War Horse from Michael Murpurgo and then Ian Rankin sent two signed books and also Clare Balding. I'm hoping I might get one or two more.  Some people wanted to buy tickets who won't be able to go to the Book Bring and Buy, so mum has set up a Just Giving Page so that people can buy raffle tickets on line.  Here is a link to the page, if you would like to buy tickets.

My third fundraising project is still hush, hush, but it is the most exciting yet and I will be able to tell you all about it very soon.  I think you will be excited too, when you hear what it is and hopefully it will get your toes tapping.  I'll tell you all about it as soon as I can.....

Thursday, 14 June 2012

I remember watching the Beijing Olympics on T.V. and loved it and was really excited that the Olympics was coming to the UK.   I was therefore delighted when mum told me she had got some tickets for the Olympic Torch celebration at Edinburgh Castle.

I hadn't been well for the past week so was worried that I might missed it, but I had been a bit better for the last couple of days and back to school, so hurrah! I made it!

There was little sign of any of the Olympic competitors, I suppose they are all getting ready for their events, but it was a good fun night and I got a brilliant view of the Olympic Torch as it came pass just in front of me.

Mum made a little film for me to share with you and so that I will remember what so many people on stage were calling a "once in a life time" event.

I hope you enjoy it.

Thursday, 24 May 2012

My Continuing Fight to Go To School

I am delighted that I have been able to go to school several days this week because a nurse has been made available to go with me.  I love going to school and get very sad if I can't go, especially when I can't go just because there is no nurse.

Mum and others have been battling to try and improve the situation so that I can always go when I am well.  Lots of people have rallied around to help me.  Sadly the people who can really control the situation, the big bosses at NHS Lothian don't seem to understand the problem at all.  They seem to think it doesn't matter if I go to school or not.  They seem to think different rules apply for children like me and we are not allowed to do the things others take for granted. They have even suggested that there is no reason why my mum should take me to school instead of a nurse.  I wonder what they would say if someone suggested they should go to their son or daughter's school to teach if the teacher is off sick for several weeks in a row.

I hoping the problem will be sorted soon.  It is not long till I start High School and missing that would be a real disaster, as I wouldn't be able to keep up with my school work at all.

Some of you may have seen the short movie "Adam's Fight to Go to School - The Movie" telling how I took a letter I had written to the new CEO at NHS Lothian.  He hasn't sent me a reply, by the way.  Here is a second movie in the same series.  This tells of some of my achievements - what I can achieve given the chance.  All I want is to be able to go to school like other boys and girls my age.

Click on this link to view my latest film:-

Monday, 21 May 2012

Adam Explores Burke & Hare's Edinburgh

My class has been doing a project on Old Edinburgh, so I decided to make a film about Burke and Hare, Edinburgh's worse killers.

I read about Burke and Hare on-line and found out lots about them.  I then went to some of the places in Edinburgh associated with them, such as the medical school they sold the bodies to and even the place they hid some of the bodies.

I filmed some of the scenes. You can tell which as these are the wobbly bits, as my wheelchair is not very smooth and it is difficult for me to hold the camera. Mum filmed other scenes for me.  I told her what I wanted to film, where she should stand to film it and when to start and when to stop the camera. I therefore acted as the Director and Mum was the camerawoman.

Once home, Mum showed me different styles of film on iMovie and I choose a "Film Noir" style because I thought this fitted in best with the Burke and Hare's story.  I wrote to words and choose which pictures and film should go with which scenes.  I like the final film and hope my teacher and others will to.

You can watch my film from this link, enjoy!

(c) Adam Bojelian 2012

Tuesday, 15 May 2012

Adam's Fight To Go School - The Movie

My fight to be able to attend school every day continues.  I took matters into my own hands and penned a letter to the new CEO of NHS Lothian yesterday, in the hope that he will act.  Here is the story of visit to his office.  I am now waiting for his reply..........

Thursday, 3 May 2012

Let Child X Go To School

Playwright Sandra Webster has written this short play based on me and my fight to be allowed to attend school, for the National Theatre of Scotland's Five Minute Theatre.  Thanks you Sandra, Linz the lead actor, all the other actors and the National Theatre of Scotland.  It is sad that the play is needed, but I am flattered to have such a moving and brilliant play written about me.

Click here to watch the play:- Let Child X Go To School

Wednesday, 2 May 2012

Opps I've done it again!

I was very excited earlier in the year to hear that I had been nominated and then shortlisted for the Sunday Mail, Young Scot, Arts Award, for my poetry writing.

Mum, Dad and I arrived early for the awards ceremony at the Glasgow Hilton last Thursday.  The invite said to "dress to impress" and I did my best, with my waistcoat and cravat.  Although I'm only 12, I am a bit of an awards ceremony veteran and the Young Scot Awards was the most impressive one I've been to yet.  The organisers did us proud, the room looked magnificent with the literally brilliant table decorations and everything went like clockwork.  Everyone on my table was really friendly and all of them were rooting for me.

I wasn't expecting to win, the competition was very stiff.  I was up against some very impressive finalists, all much older than me. Toni James, 26, from Paisley is an accomplished pianist who has played at the Carnegie Hall in New York and the  British Embassy in Oslo.  The other Arts finalist was Shetland Young Promoters Group, a group of 14-18 year olds who stage music events.  I was therefore really excited and surprised when I was announced as the winner of the Arts award.  Young Scot Awards made a short film about me, which you can link to here  I didn't notice on the night, as I was on my way up to the stage with mum  so had my back to the audience, but according the the write up in the Sunday Mail last Sunday, the audience gave me a standing ovation. I was overwhelmed to learn that.

It was a real honour to be a prize winner and along with the other finalists to show the world what young people in Scotland can achieve with the right support.
I'd like to congratulate all the other finalists and winners, especially the winner of the overall Young Scot of Year award Erin McNeill, who looked stunning in tartan.
I would also like to thank Norma Curran from Values into Action for nominating me and for the cast of thousands, including mum and dad for giving me all the help and support I need to achieve and excel.

I'm really looking forward to taking my award into school to show my classmates, I know they were all rooting for me and will be as excited as me that I have won. I haven't been able to get into school lately.  It is a long story and for another day.  I hope me getting this award has shown lots of people that supporting me is worthwhile and despite all the challenges I face I can contribute just as much as other boys and girls my age to Scotland.  Thank you Sunday Mail and Young Scot for giving me this wonderful opportunity and a night I will always remember.

Wednesday, 4 April 2012

A new poem for Spring

I am March, April, May,
I am new life starting today.
I am brisk and bright,
I am a flying fluttering kite.
I am trees in the breeze,
I am cold, go away please.
I am the sun in the sky,
I am wispy clouds high.

(c) Adam Bojelian 2012

Thursday, 29 March 2012

Haiku & Einstein

As I can't get to school full time I have a home teacher who comes to work with me twice a week. She even comes to work with me if I'm in hospital. Her name is Julie and she is absolutely brilliant, she works for the Hospital and Outreach Teaching Service.  I do the same work with her, as I would be doing if I was able to get into school full time and she always makes it really fun.

I share the work I have done at home with my teachers and classmates.  One of the ways I do this is using Vokis.  I choose the avatar and what they will say and the avatar speaks my words for me.  I like to choose an avatar which matches the work I am doing.

Here are some Vokis I made with Julie, the first one presents two Haikus I wrote and the others present the project I did on Einstein. I had lots of fun working on this projects so do hope you enjoy them.