Wednesday, 8 July 2015

The Boy Who Kept On Receiving...

At Adam's Memorial Service in Yorkshire in April, NHS Confederation CEO Rob Webster described
Adam's poem Leadership as "the gift that keeps on giving".

Yesterday it seemed Adam is the "boy who keeps on receiving" as he received yet another accolade, being named as one of Health Service Journal's inaugural Patient Leaders.

Adam would have been awed to be included on the list alongside so many of the truly inspirational people he chatted with and followed on twitter, far to many to mention here, but all listed via the link below.

He would have been proud that people had admired him enough to take the time and trouble to nominate him.

Thank you Health Service Journal for recognising the important role patients play in the leadership of the NHS.  Thank you in particular for recognising the leadership of several inspirational young people.

Thank you all those who nominated Adam. No-one can be a leader unless others empower or allow you to be one, so thank you for doing this for Adam.

Huge congratulations to all the other HSJ Patient Leaders. It was wonderful to meet so many of you at the reception.  Thank you for all you do for all patients, families and indeed for making the NHS a better place for staff too.

Thank you every patient, carer and family member who has put their head above the parapet when needed, whether or not you are on the list.

We often hear of the courage staff need to put their head above the parapet and lead; of the barriers and attacks some will face for doing so.  Believe you, me, for patient leaders the barriers are even higher.

More than any award this one has made me appreciate just how awesome my wonderful Adam was.  It is the award that he had to face more challenges and barriers than any others to achieve.  Thankfully he has helped many hundreds of miles along that path by truly inspirational paid NHS leaders such as Rob Webster; Kath Evans; Kirstie Stottt and many, many more.

Great leaders inspire and create great leaders.  For all the barriers Adam faced in his life, he was privileged, largely through twitter, to meet many NHS staff who opened doors rather than put up barriers and allowed him to use his extensive knowledge and expertise of NHS services across the UK to help in a wee way to change the world for the better.

Adam Bojelian

Poet and patient leader
Adam is sadly no longer with us: the 15-year-old, who was born with cerebral palsy, died in March. But our judges were absolutely clear that the incredible influence this young man had over the course of his short life deserved recognition in this supplement.
Adam was paralysed, but communicated through blinking. He wrote award-winning poems and latterly became a hugely popular presence on Twitter. In 2014, he was asked by NHS Confederation chief executive Rob Webster to pen a poem on healthcare leadership, the words of which have been widely shared.
Said one of those nominating him: “Adam highlighted the need for NHS leaders to care and helped leaders to rethink their behaviours and attitudes to delivering services. His legacy lives on through improved care processes across health and social care.”
Judges’ comments: “Adam is definitely on the list. He deserves the spotlight.”

Read the full list here:-

Monday, 1 June 2015

Adam Remembered

Since Adam's tragic death on 24th March we have been overwhelmed by all the cards, letters and flowers we have received.  As can been seen from the Celebration of Adam's Life held in Yorkshire in April (see film below) Adam touched thousands of lives.

A number of people have written articles, blogs and reflections about Adam.

Thank you everyone who has written to us; about Adam; attended a service in his memory and/or have donated to Sepsis UK in Adam's memory.  Adam asked that donations be made to Sepsis UK in his memory. You can do so if you would like to HERE

With thanks to the authors, here are some pieces written and tributes paid to Adam since his death:-

"But Above All He Raised Hope" by Pauline McLean BBC

No Excuses In Memory of Adam Bojelian by Paul Clarke

Leadership - My No Excuses Role Model by Rob Webster, NHS Confederation

Take Me As I Am by Kirstie Stott

Brave Adam - A Call To Arms by Young Health Participation

Bounce by Dr Carmen Soto

Sleep Softly Our Wee Prince of Poetry by Gareth Jones, Eduzine Global

The Edge, NHS Quality Improvement

"My organisation's highlight" by Ruth Evans Patient Experience Network

Daily Mail

The Mirror

Daily Record

The York Press

Edinburgh Evening News

Whose Shoes

The Broughton Spurtle

Vietnam News

Aidan Aird, Canada



NB: Several of the newspapers say Adam became paralysed at 10 months old.  This is not true, we are unsure where this information came from. We think it was published by one paper in error and then copied by others.  Adam did however have very limited physical movement due to his cerebral palsy.

Tuesday, 12 May 2015

A Celebration of Adam's Life in words, music and prayer was held on Saturday 11th April 2015
at St. Mary's Church, Tadcaster, North Yorkshire, UK.

On a beautiful spring days family and friends gathered from around the UK and further afield to hear recollections of Adam and to hear Adam's words read and music played beautifully by his family and friends. Thank you to everyone who came and everyone who took part. Thank you also to Sugi and Mark for making the beautiful film (available above) of the event.

Thursday, 7 May 2015

A Gift From Adam

This poem was found amongst Adam’s school work after his death.  From the handwriting of the assistant it must have been written in 2010/11.

It is clearly unfinished, for example, Adam had not added punctuation, apart from two commas, which he tended to add last to his poems.  It is a wonderful gift to find from Adam.


Winter is
Frost on my window pane like an artist’s stroke
Shimmering it sparkles with the changing light
Icicles clinging from the roofs and doorways
People slipping and sliding balancing precariously
Along winding streets and lanes

It is a winter tapestry
Snow covered hills
A frozen lake that a gliding swan swims on

It is a glittering star
A silver rocket
Landing on the moon

Shivering freezing sneezing
Fingers and toes
Face red
Nose running

Hats on heads
Collars turned up
People wrapped up
Thick socks, wellies, furry boots

Winter is a frosty landscape
A colourless time
Windows frosted over
Fields covered in snow
All is white

© Adam Bojelian

Monday, 13 April 2015

A Lullaby For A Royal Baby

Lyrics by Adam Bojelian
Music by Wolfgang Amadeus Mozart
(Minute & Trio in G (K1)

Sleep softly my princess*,
Sleep softly my princess,
As you do, all night through,
I’ll be there,
And the angels too.

Sleep softly my princess,
Sleep softly my princess,
As you do, all night through,
I’ll be there,
And the angels too.

Sleep softly my princess,
Sleep softly my princess,
As you do, all night through,
I’ll be there,
And the angels too.

Sleep softly my princess,
Sleep softly my princess,
As you do, all night through,
I’ll be there,
And the angels too.

Play boldly my princess,
Play boldly my princess,
With a tickle,
With a giggle,
Play boldly my princess.
Play boldly my princess,
Play boldly my princess,
With a tickle,
With a giggle,
Play boldly my princess.

Play boldly my princess,
Play boldly my princess,
With a tickle,
With a giggle,
Play boldly my princess.

Play boldly my princess,
Play boldly my princess,
With a tickle,
With a giggle,
Play boldly my princess.

Sleep softly my princess,
Sleep softly my princess,
As you do, all night through,
I’ll be there,
And the angels too.

Sleep softly my princess,
Sleep softly my princess,
As you do, all night through,
I’ll be there,
And the angels too.

If the baby is a boy the words wee prince should replace the word princess
© Adam Bojelian 2013

Sunday, 29 March 2015


Thank you everyone who has sent messages of condolences following Adam's tragic death from sepsis. Your messages and all the wonderful tributes these have been a great comfort to us all.

We hope you can join us to celebrate Adam's life.

If you are able to attend, please click here to confirm attendance:-

Please do share this invitation with anyone you feel may like to attend.

Many thanks

Zoe & Paul Bojelian

Sent from my iPad

Sunday, 8 February 2015

Why Disability Matters Matters

I am honoured that the RCPCH asked me to write a Rap for the launch of Disability Matters on 5th February 2015.

Unfortunately I was too poorly to be there, but I did manage to read it using my iPad voice from my sick bed.

I also wrote some music to go with it using garage band.

You can hear it here:-

Please do spread the word about #DisabilityMatters and sign up to it.

If every body who works with children and young people completed the modules the world would be 
a better place.  

You can find #DisabilityMatters here:-

Monday, 22 December 2014

It's A Wonderful NHS!

Thank you everyone who organised, contributed and came to the best party ever.

The NHS at it very best.

Rob Webster tells more here:-

And here is a link to the NHS Employers page where you can see all the fun:-

We are so lucky in the UK to have an NHS full of so many stars!

Thank you for making my Christmas the best ever!

Sunday, 21 December 2014

My thank you speech from my party 19th December 2014

Thank you everyone for coming to my party today.
Especially everyone who has travelled a long way to be here.  
People have come from London and Scotland! 
Thank you everyone who has sent messages.  Thank you to the brilliant choir.
Also thank you everyone who has supported me through a very tough
year, both everyone here today, and all my friends on twitter.
Thank you to everyone who has given me a voice, especially Kath Evans, Rob Webster, Eduzine Global, Young Epilepsy, and all at NHS Change Day.  
Thank you everyone who has helped me with my fundraising, while I been in hospital.  Together we have raised over two thousand pounds.
Special thanks to cousin Sean, ( who is here today) for making the Commonwealth Games such fun for me, (I was almost as excited as Uncle Neil that you were in the Games). 
Thank you everyone who took part in my World Cup sweepstake for making that so much fun.
Thank you everyone at Leeds Children's Hospital, for looking after me, especially the ward 40 nurses, you are the best .
Finally thank you, Kirstie, Vanessa,, Danni, Sam, Rob, and everyone at Horizon & NHS Employers & NHS Confed for organising the world's best party.
Sorry I'm far from my best today. I was determined to be here. 
Thank you everyone, I'm overwhelmed by your kindness. 

Friday, 10 October 2014

My Next Steps in Fundraising...

I love fundraising, it is one of my hobbies.  Planning things and raising funds always cheers me up.
I've made lots of good friends through fundraising, especially on twitter. Hopefully the funds I have raised have also done some good, even if it is just a little.

I've got a number of fundraising projects & plans at the moment.

I'm selling desk calendars with my poems for Young Epilepsy.

I'm also selling mugs with my Leadership poem for Leeds Children's Hospital Appeal.

If you would like either please do contact me via this blog or on twitter @AdsthePoet

Mum is helping me organise a "Bake Off" competition in my village. My village friends
will decorate cup cakes and cakes, with prizes for the best designs for people of all ages.
We will then auction the cakes with proceeds going to Young Epilepsy. There is already 
a lot of support for the idea in the village and I haven't even set the day yet.

Last year for Children In Needs I auctioned me writing a poem for the winner. It was very popular and the winner @kirstie79 loved my poem Happiness, so I'm thinking of doing the same this year.

I'm also looking ahead to next Spring when the weather is better.  I have hundreds of books, so I'm thinking of holding a book sale for @Readwell in my lane.  I also have lots of teddy bears so I could include some of them too.

Sometimes being in hospital is really tough, but planning and organising these activities really helps me get through tough times.

Thank you everyone who has supported my fundraising. You are superstars.