Ali's Story
"Everyone is so caring, and I really appreciate it. Whenever I come here, I forget that I am sick"
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The ‘kind, gentle and caring’ support he is receiving from Thames Hospice, combined with his strong Muslim faith is helping Ali Raza stay happy and face his future with Motor Neurone Disease (MND) and without his two-year-old son.
Ali, 36, who, despite his declining health, continues to work as a security guard in Iver while living alone in Slough, was only formally diagnosed under a year ago after many tests both in the UK and in his native Pakistan.
As his condition deteriorates, coping with everyday tasks in accommodation with a shared upstairs bathroom, is becoming more of a challenge for Ali every day.
“I am struggling, frightened and crying sometimes,” he admits. “It is hard to pull up the blanket at night, getting dressed and having a drink and eating. But I have to live my life.”
Coming to terms with the physical symptoms is one thing. Ali also has a heavy emotional burden to carry. He married in 2020, and he and his wife had baby Rahiq two years later. He says that when he became ill, his wife left and took Rahiq with her to Dubai.
“I have no contact with her or my son. I want to see Rahiq, but I don’t know where he is and if I did see him, I wouldn’t be able to hold him in my arms as I have lost my strength.”
With no family and few friends in the UK, Ali continues to work so he can keep paying his bills which are rising as he relies on takeaways now his condition means he’s unable to cook.
The neurology team at Wexham Park Hospital referred Ali to Thames Hospice and have told him he will soon require a wheelchair.
“I didn’t know anything about the Hospice before. The staff are so nice, kind and gentle. I have lunch here, maybe do some exercise and physio and sometimes acupuncture. Everyone is so caring, and I really appreciate it. Whenever I come here, I forget that I am sick. And then they also phone me at home to ask if there is anything I need.”
Alongside the support Ali receives from Thames Hospice, he also believes his faith has played a big part in his ability to remain positive.
“I have a strong faith in Allah. When I was sick a few months ago and couldn’t speak and was struggling to eat, I read the holy book and prayed five times a day. Everything started coming back, although I know I am still sick.”
On days when Ali doesn’t feel able to travel to the Hospice on his own, volunteers collect him and take him home again.
While he still retains some mobility, Ali is going to travel to Pakistan later this month to see his family, his mother in particular, who herself is seriously unwell.
“Faith is very helpful to me and people around me are helping me. I would definitely be sicker if it wasn’t for Thames Hospice. They do whatever they can to help me. I have accepted what’s happening to me and that I am getting sicker every day. Sometimes I cry about dying soon, but I try to feel happy all the time.”
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