His smile lit up a room
Matthew's story
This Christmas is going to be difficult for us. Last year, on December 29th, our precious son, Matthew, died. He was our only child and he was the centre of our world. We future-proofed our house because we knew he was going to live at home full-time when he left school and we set about looking for activities that would make his life stimulating and multisensory. We always knew he had a ‘life-limiting disorder’ but we didn’t expect him to die so suddenly after Christmas 2023. He had been so well and joyful – he was just 26 years old.
As we approach our first Christmas without him, we wanted to share his story – because in doing so, we hope to honour his memory and continue the huge legacy that he has left behind – his infectious smile, his incredible artwork, his ability to connect with others.
"The support Matthew received from Sense Scotland was life-changing - not just for him, but for us as a family. We saw our son thrive in ways we never thought possible.
Your ongoing support has sustained Sense Scotland's unique work over many, many years. This Christmas, we are asking if you can continue that support by donating to their Christmas Appeal, and ensuring that other families like ours have the same opportunities for their loved ones."
Unlocking Our Son
Everyone who met him said that Matthew’s smile would light up a room, and his laughter was his own special way of communicating with the world. Matthew’s life was hugely challenging, due to his complex disabilities.
He suffered a life-threatening illness after he was born and severe chickenpox before he was two which caused him to become “locked inside his body”. A severe form of cerebral palsy in all four limbs restricted his movement and he was cortically blind, though he saw light and colours. Despite this massive set back, we always believed that our “chatty Mattie” was still in there and so it became our life’s mission to try to unlock him and enable him to live his best life.
We moved to Scotland so Matthew could attend the Royal Blind School in Edinburgh. It was here in Scotland that Matthew became his true self and embraced life. In 2016, we were introduced to the extraordinary team at Sense Scotland, and that’s when Matthew finally began to express his true personality.
Through art, music, and drama sessions at TouchBase Glasgow, Matthew found a way to fully express himself – something we had encouraged throughout his life.
Finding Freedom
We’ll never forget the sounds of Matthew’s laughter on the videos sent back from his music sessions. In music, he worked intensively with David McCluskey, an incredible musician, who helped him learn how to free his voice through one-to-one vocal sessions. Sometimes at home, Matthew would be in his room playing with his voice: holding notes for what felt like forever, and experimenting with high and low tones. For the first time, he was able to communicate in a new way and develop a vocal conversation. We realised that David was showing him not only how to control his voice, but how to turn-take. Matthew learned to wait, to anticipate and to understand the structure of their one-to-one sessions.
Incredible techniques that helped Matthew communicate in other settings and with other people. When Sense Scotland suggested he try art, we didn’t think Matthew would enjoy it at first. Art at school had always bored him, but Imelda, an accomplished artist herself, wasn’t deterred. She created something magical: a way for Matthew to engage with paint and canvas that was completely sensory. Chaos reigned, and Matthew loved it. Thump! Splat! Whoosh! Paint would fly, and everyone in the art room would laugh. Incredibly, through these sessions, Matthew learned to control the involuntary spasms of his arms and legs by anticipating sound – an incredible breakthrough for him, gaining control of his body and co-ordinating his movement, learning to anticipate what was coming – that was the best fun of all!
These moments of freedom, joy, and creativity were the highlights of Matthew’s week. Thanks to Sense Scotland, our son had a chance to express himself in ways that words could never capture. His artwork has become his legacy; it tells his story – one of resilience, joy, energy and an indomitable spirit.
"Be a part of Matthew's legacy by donating to Sense Scotland's Christmas Appeal. They need your help because provision of specialist arts and music therapy for people with complex disabilities and communication needs is severely limited, yet highly effective.
Sense Scotland are one of only a few registered care providers in Scotland who offer these opportunities. Music and art can and does change lives. Please donate today."
Christmas Without Matthew
Matthew loved Christmas – it was his favourite time of year. We have so many fond memories of decorating his ‘Bear Tree’ together – a tall stick tree covered in twinkling lights and tiny foxes, bears, badgers and mice that he’d collected over the years. On Christmas Eve, we’d attend the Nativity service, where Matthew, filled with excitement, was chosen to play the Angel Gabriel – his final role, just a few days before he died.
On Christmas Day, although he couldn’t share Christmas dinner, he always had a special place at the table. He loved being part of the sensory experience – the crinkle of wrapping paper, the jingle of bells, the smells of the feast cooking. This Christmas will be a huge loss without him; Matthew was our gift from God – that’s what his name means – and we will miss him terribly. But we want to turn our grief into something positive – something that will help others like Matthew.
That’s why we’ve decided to share his story with you, and why we’re asking for your help.
Matthew’s Legacy
Sense Scotland’s art and music therapy programmes gave Matthew a voice, and they continue to do so for many others with complex disabilities. But these services are limited, and the need is great. That’s why we’re asking for your help this Christmas.
"In honour of Matthew, we ask you to consider donating to Sense Scotland's Christmas Appeal. Your gift will help fund the specialised care and creative therapies that changed Matthew's life, and will allow for other families to experience the joy we were so blessed to witness in our son.
Your donation, no matter the size, can make a real difference."
From Our Family to Yours
If Matthew’s story has touched your heart, we hope you’ll consider donating today. Together, we can make sure that more people like Matthew have the chance to find their voice, to be immersed in creative experiences and to find joy and fulfilment in their life.
With grateful thanks and warm wishes to you and your family this Christmas.
Paul and Katriona Goode
P.S. Matthew’s incredible artwork is part of his legacy, and we want his legacy to live on – so we have set up MATT ART and are selling prints of his work to support Sense Scotland.
If you would like further information please email kmacewan@btinternet.com for an order form. Without these funds, Sense Scotland’s work would stop.
Please donate or purchase today, if you can.
Connecting Through Creativity
Imelda Neale, Arts Tutor
“Working with Matthew was both a joy and a challenge. He had this massive, infectious smile and laugh that could light up any room, and his presence was a bright, unstoppable force in the art space. But we came from very different angles when it came to creativity. Matthew was all about sound, while my background was in painting and printmaking. Music wasn’t my area of expertise, and yet Matthew had a natural way of bringing the two together.
When we first started, I knew we had to find common ground. So, I decided to see what sounds we could create while making art. It wasn’t about me mastering rhythm—trust me, my rhythm isn’t perfect—but Matthew didn’t care about that. It became about the shared experience, the laughter, and the process.
We started experimenting with different kinds of art, trying to find the one thing that would unlock his creativity. And finally, we found it: canvas.
But not just any canvas—great, big, wobbly, splatty canvases that never stayed solid. They were full of energy, just like Matthew. And the sounds! The canvases had incredible sound qualities, creating booming noises that echoed through the room. It was a breakthrough.”
We had found Matthew's thing - the key to his expression.
“It wasn’t just painting for Matthew —it was drumming, splattering, making music with the canvas. We’d throw things at it, hear the sounds they made, and laugh at the chaos. Matthew loved the silliness of it, the big, exaggerated movements, and the sheer joy of creating something with so much noise and energy. We made huge drumming motions, using paintbrushes as our drumsticks, and even dragged the canvas across the floor to see what kind of sounds would emerge.
For Matthew, it wasn’t about the finished product; it was about the process, the fun, the sounds, and the freedom of expression. But we did create some amazing pieces together. My favourite is the beach canvas. There was something magical about the connection between the materials and the process of making it. Matthew had collected ropes, driftwood, shells, and sand from the beach himself. As we worked, we imagined the sounds of the ocean—the bouncing of sand on the canvas, the pitter-patter of shells, and the swishing of the brush-like waves. And, of course, there were seagull noises—I wasn’t very good at them, but Matthew loved it.
Though Matthew’s life was too short, his impact on me—and on everyone he touched—was immense. I miss him dearly, but his legacy lives on in the joy he brought to our shared creative process and the incredible artwork he has left behind.”
The children, young people, and adults we support at Sense Scotland face complex communication and healthcare challenges.
While many lead fulfilling lives, their medical conditions can sometimes shorten their time with us. This is why every moment becomes previous and every day counts. We focus not on limitations, but on the incredible potential each individual holds. Everyone deserves the opportunity to live their best life and to reach for their dreams.
With your help, we can continue to provide the support they need to make this a reality. This Christmas, please consider making a donation to help us empower them to live life to the fullest.
£20
A donation of £20 will help fund our ASDAN Awards programme. This rewards the achievements of the people we support in developing their personal and social abilities. Challenges include mastering many everyday things that most of take for granted – such as using public transport, coping with people and cooking.
£50
A donation of £50 funds a Twinkle Tots session, where children under five and their parents can come together to play, bond and have fun. Our Early Years Advisors guide families on how to use sensory toys to encourage learning and communication. These toys are also available to borrow for free from our Sensory Toy Library, providing ongoing support and engagement.
£100
A donation of £100 will help fund our Paradise Arts project. People we support all across Scotland are currently working with our Arts team to express their meaning of paradise. Multiple artforms – including performance, music, storytelling and visual art – are being used to capture their ideas, which will be showcased in a multi-sensory exhibition upon completion.
Do you want to give the gift of opportunity this Christmas? If so, please donate today:
We also welcome donations over the phone. Call our Fundraising team now on 0300 330 9292.