Evan is 16 years old and lives with his family in Glasgow. Evan has quad dystonic cerebral palsy. Grace, Evan’s Mum, tells us that Evan is “very physically disabled due to his condition. He relies on others for every aspect of his care and needs.”
Evan is non-verbal. “He communicates by eye-pointing and whilst he can understand what we are saying to him, it’s not always easy for Evan to communicate everything he wants to.
“He wants things to happen as he expects and if it doesn’t he can get himself a bit worked up which in turn, can trigger his dystonic spasms.’ Dystonia causes muscles to contract and spasm uncontrollably. ‘He can usually be calmed or distracted with music. Uptown Funk is his personal favourite and we frequently sing it – usually quite badly by me when I shower Evan, which he finds hugely amusing but also makes the process go a lot smoother.”
Grace tells us that even though Evan’s condition can be challenging for him, “he is a relatively content and happy young man. He has a fantastically wicked sense of humour and a huge, lifelong love of Formula 1.”
How Family Fund helped
Family Fund has helped Evan’s family since 2007 with family breaks, garden works, a cooker, and most recently, an iPad.
“I have always been Evan’s full-time carer so Family Fund have helped our family over a number of years.”
During the pandemic, “Evan has been watching the government ‘Stay at Home’ adverts and advice between programmes. He has a tendency to take things very literally, so it has been a challenge to get him to agree to go outside, even into the garden, during the current lockdown.”
The iPad has helped Evan to go into the garden and take his device with him. “The grant for the iPad has been fab. I’ve downloaded some music – Uptown Funk of course – and he can watch his beloved Formula 1 channel on his iPad, whilst sat in the garden. It means I can be sure he’s getting fresh air and vitamin D.”
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