The Adam Bojelian Foundation CIC (AdsFoundation)

WHO was Adam Bojelian?

Adam Bojelian was born in Hampshire, England in 2000 and died in Yorkshire from sepsis in 2015. He lived most of his life in Edinburgh, Scotland.

Adam acquired cerebral palsy at birth and went on to develop multiple health needs. Despite this, until his last months Adam lived a full and active life. He was educationally very bright, being top of the class in all subjects in mainstream school.

Aged nine Adam attended a poetry group at his local Unitarian church in Edinburgh and wrote his first poem that summer. Writing for Adam was exceptionally time consuming. Due to his cerebral palsy and his tracheostomy Adam was no longer able to speak, so instead he wrote by spelling out words using a spelling chart or by selecting words from word lists he found on-line.

A year later, aged just ten years old, Adam won the first of many national and international awards for writing, a Brit Writers award, followed very quickly by a gold Blue Peter badge.

Adam gained international recognition and worldwide media coverage when at Christmas 2012, his poem Christmas Gibbons, which had been set to music by Hollywood musician Tom Harrison, reached number 2 in the iTunes Music For Children Chart. The poem tells the delightful story of how, it is gibbons who swing around the world on Christmas night delivering presents for Santa.

As Adam’s fame spread he began using his voice to tell the world about his experiences living with cerebral palsy, especially the challenges he faced attending school, due to lack of support and not being listened to by some health professionals, despite his immense knowledge and experience of his own health needs. Adam blogged about his experiences, he was interviewed by the BBC and others and was also invited to give a talk to Members of the Scottish Parliament, which he did using his iPad voice.

As he entered his teenage years, Adam was increasingly commissioned by national organisations to write for them. Rob Webster, the then CEO of the NHS Confederation commissioned Adam to write a poem on leadership, which was read at that organisation’s annual conference and is now widely used by the NHS and other bodies. The Royal College of Paediatrics and Child Health asked Adam to write a rap to celebrate the launch of Disability Matters, a national training resource, to which Adam contributed, for everyone working with children and young people, to help challenge disability discrimination, particularly in healthcare. Adam was also commissioned by a national charity to write a lullaby to celebrate the birth of Prince George. Adam loved music and set his poem to a piece by his favourite classical composer Mozart.

Adam became a much loved voice on twitter, enjoyed by thousands. He was well known for his ability to celebrate the good, whilst highlighting in a positive way where improvement is needed. In 2012 The Scotsman newspaper named Adam as one of ’40 people who put Edinburgh on the map in 2012′ and in 2013 Adam was listed on The Independent on Sunday’s ‘Happy List’, identifying him as one of the people who brought the most happiness to the UK that year.

Adam spent half his life in hospitals and for the most part received wonderful care from literally thousands of dedicated health professionals up and down the United Kingdom. However, in the last months of his life Adam experienced distressingly poor healthcare. His care plan which he had helped write with health professionals in Scotland was ignored by his new hospital in Yorkshire and they refused repeated requests to write a new one until the last days of Adam’s life. His and his parents’ concerns about his health were ignored and despite the best efforts of some individual exceptionally dedicated and kind nurses, doctors, and allied health professionals and extreme kindness from the ward’s domestics. Adam died an exceptionally distressing death from sepsis in March 2015, aged just fifteen.

Published by BBC, 25th March 2015

Since his death, Adam’s legacy lives on, the NHS nationally hosts an annual Adam Bojelian Memorial Talk. National guidance from bodies including the National Institute for Health and Care Excellence (NICE) have dedicated national guidance to Adam. Several PhD scholars have dedicated their PhD thesis to Adam and academic books and book chapters have likewise been dedicated to him, recognising the huge contribution his blogs, talks and insights contributed to our understanding of the experiences of children living with disability, especially in healthcare.

A celebration of Adam’s life and poetry was held following his death, where tributes were paid to Adam by family, friends, health, education & third sector professionals. The celebration was beautifully recorded in this film.

The Adam Bojelian Foundation builds on the work Adam, despite his young age started, and his determination to improve the well-being of all patients, families and staff.

A beautifully illustrate book ‘Playing With Words‘ containing some of Adam’s best loved multi award winning poems was launched at the Edinburgh International Book Festival in August 2023. Copies of ‘Playing With Words’ can be purchased from our SHOP, with worldwide shipping options available.

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