Adam: when lifelong support becomes lifeline support

Everyone we help can contact us if their abilities or needs change. For many, this translates into an expectation of a bright gaming future but when Adam could no longer play, our lifelong promise became his lifeline to the world.

Adam, an avid gamer, passed away last year. He had muscular dystrophy, and when our specialist assessment team first met him in 2014 they were able to help him play games like Assassin’s Creed on his PS3 and laptop, despite his minimal finger movement. With careful positioning, he was able to use a small joystick with his right handandsome buttons with his left hand and his head.

Below: (main image) Adam in 2014 with his setup, and (inset) with a friend, using his chin-controlled joystick in 2019

Over the following years his condition steadily progressed, and when the games he loved became too tiring for him to play and he was unable to leave his room, his laptop became his life.

“Adam’s entire life was spent online – watching gaming videos, watching movies, it let him sort his finances, write a book – but most importantly it kept him in touch with us,” explained one of his friends.

For six years our team returned again and again to find new ways for him to keep using his laptop as his abilities changed. Although by 2019 he had lost all movement in his hands, we were still able to help him use his laptop via a very sensitive miniature joystick that was precisely positioned by his bottom lip.

“When everyone else would have said ‘That’s it now, his condition has progressed too far to be able to control a mouse himself,’ you found a way,” said his friend. “And every time you did, his spirit continued. Every time it seemed to him that all was lost, you found a solution and kept him going. His whole demeanour would change every time your equipment gave him the confidence to keep going. When his finger failed, I still remember how relieved and pleased he was at the amount of control he regained through using his lip.”

“Your multiple interventions over the years literally kept him in touch with his world. You spent time with him, tried so many solutions, and even though his case was a very difficult one, you persevered and succeeded for him. This had more impact on his quality and enjoyment of life than anything else. In the last few months, we would chat a few times a day, and that was thanks to your help. I am so grateful, and I know he was too.”

Our commitment to offer ongoing help is so important to us. It was a genuine privilege to help Adam throughout the changing nature of his condition and we’re honoured that our lifelong support went beyond gaming to make such a fundamental difference to his quality of life.

Our grateful thanks go to Adam’s adopted family for letting us share his story.