For most 17 year old boys life is filled with school work, playing football with their friends and first dates but for Harry life is very different. He has the muscle weakening condition Duchenne Muscular Dystrophy and has been confined to a wheelchair since he was 11.

Although he attends a mainstream school and is due to take his GCSEs next year, Harry is reliant on his parents and two sisters to do most things including eating, dressing, moving into a comfortable position in bed and going to the bathroom.

His mum Joanne says:

Harry has always been shy but as he has got older this has become more apparent. As his friends are becoming more independent, he is becoming more reliant on us to do the most basic of things and this is obviously upsetting for Harry. He is not able to get on a bus and hang out in the park with his friends so he is often not invited to things that he could do such as a cinema trip.

As his condition is a progressive one, Harry had never been hospitalised before April 2015 when he contracted pneumonia. It was at this point that a Community Nurse referred the family to Haven House.

Joanne says:

My immediate thought was that a hospice was for people at the end of their life. However, as soon as I walked in I thought oh wow, this is an amazing place. If felt like home and I was so happy that Harry would be given the opportunity to go there.

Having survived without any kind of respite for so long, Haven House has enabled Joanne, her husband and her two daughters to enjoy activities, such as ice skating, without the guilt of leaving Harry on the sidelines. More importantly however, Harry’s stays at the hospice have given him a sense of independence and the chance to build his confidence.

Joanne explains:

Harry really enjoys himself at Haven House and it has been lovely to see him come out of his shell. Without his family around he has to ask the nurses for help and talk to people he doesn’t know well. He loves art and his sessions with Rowline have allowed him to express himself in ways that we have not seen before.