Mohammed's story

Until the age of four, Mohammed was like any other boy. He had had an ordinary birth, was putting on weight and parents Mushtak and Roshan had no reason to be overly concerned that he was slightly late learning to walk and talk. But just after starting school, Mohammed started to deteriorate. Three years later, he is confined to a wheelchair, is blind and suffers from seizures. And his condition is life-limiting.

Roshan explains: “When he started school, teachers noticed his concentration levels were low and he couldn’t do the things other children in his class could do. He had some tests at Great Ormond Street Hospital and they showed he might have learning difficulties, so he was sent to a specialist school.” But Mohammed’s condition worsened. “He started to lose his sight and this was so frustrating for him he would start throwing things around.”

Mohammed had further tests, and doctors soon discovered he had a rare genetic condition which his Uncle had died from as a child 40 years ago. Worst of all, the doctors dropped the bombshell that Mohammed’s condition was life-limiting.

“The impact of the news was very, very bad,” admits Roshan. “The day we were told there was nothing that could be done, it was the worst day of our lives. We didn’t know where to go or what to do. You rely on doctors and when they say they can’t help, you think no-one can help.”

One afternoon in Hounslow’s Toy Library, Roshan got speaking to another parent who told her about Shooting Star. Roshan referred herself and after a visit from Shooting Star’s nurses, the family started attending Shooting Star House.

“When we first went there it was amazing. I loved it and my kids didn’t want to leave! It immediately felt right for Mohammed and the rest of the family.”

One of the benefits Shooting Star gives to Roshan is a chance to rest. “The first thing I do whenever I wake up is think about Mohammed’s needs – getting him up, washing and dressing him, getting his breakfast ready, it continues all day. The morning after our first night at Shooting Star, I opened my eyes and I didn’t have to worry because I knew he was being looked after. When I came downstairs he had already had breakfast and his medication. It was such a relief.

If Shooting Star didn’t exist, life would be very difficult. We have carers who help us, but they aren’t trained nurses in the way Shooting Star are. If he has a seizure at Shooting Star, they know exactly how to control it. Mohammed loves the hospice. He loves the ball pool in the Sensory Room and swimming. We also have outreach support which allows me to do normal things like getting the shopping or doing household chores. Life is easier with Shooting Star.”

In time, Mohammed will be confined to bed. “Of course you get upset when you think about the future, and some days are very difficult, but we have to keep going,” says Roshan. “My main priority is to keep Mohammed as happy and as comfortable as we can. Shooting Star help us do that.”