“My day-to-day routine varies widely but my illness [Karis has congenital muscular dystrophy] is progressive and although I used to be able to eat and drink, sit up, and speak quite loudly, my muscles have weakened and I am unable to do all of these things. I have never been able to walk or stand. I’m still able to speak but I need a microphone as my speech is muffled by the ventilator mask, which I have to wear full-time now.
“I need assistance with all aspects of personal care, medicines, etc and I use a powered wheelchair. I also need a portable ventilator to help me breathe and I have nutrition through a gastrostomy tube as I can’t eat any more. I need frequent suction for secretions and it takes me about two hours to get showered and dressed, I then have to use a machine to help me cough, after which I’m usually working on my OU work or English, maths, or French, interspersed with breaks for resting or going outside into my garden or down town shopping or for coffee. I go to a digital animation class every Friday from 4-6pm with a friend who acts as my hands for me.
“I really like going to the cinema, and theatre, and I even got to Glasgow to see and meet Macklemore and Ryan Lewis, courtesy of Starlight. As you can see, it can be a life of extremes! I love travelling and we try to get to the south of France every year, but we have to drive all the way as I’m unable to fly because of the air pressures and I would need a cargo plane to take all the equipment I need with me!” – Karis Williamson