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’s dystonia has caused scoliosis and a hip dislocation, but thankfully, as Grace explains, ‘they haven’t caused him any issues with pain, so they haven’t had to be operated on.’

Daily life for Evan

Evan is non-verbal. ‘He communicates by eye-pointing to say yes, or no, and whilst he can understand what we are saying to him, it’s not always easy for Evan to communicate everything he wants to.’

Evan likes his routine. ‘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.’

Evan currently attends a special needs school where they follow an adapted curriculum. He too, is tube-fed. ‘He can eat orally but he is very selective in what he will eat.’

Grace tells us that even though Evan’s condition can be challenging for him, ‘he is a relatively content and happy young man with a fantastically wicked sense of humour and has a huge, lifelong love of Formula 1.’

 How we’ve helped

Grace has applied to Family Fund since 2007.

I have always been Evan’s full-time carer so Family Fund have helped our family over a number of years.

Family Fund has helped Evan with family breaks, garden works, a cooker, and most recently, an iPad – ‘something I thought would be very useful to Evan, especially during the current Coronavirus pandemic.’

How it’s made a difference

‘Evan has been watching the government ‘Stay at Home’ adverts and advice between programmes and 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, and I can be sure he’s getting fresh air and vitamin D.’