Ben and Ollie are 6-years-old. The boys’ condition was diagnosed when they were three-and-a-half and they have been visiting Helen House with their mum and dad, Fiona and Mike, for over a year.
Fiona and Mike admit they did have some initial reservations about coming to Helen House with the boys. Fiona says: ‘Our health visitor mentioned it to me and my first thought was, ‘no w
ay, that’s not for me! She talked me into just coming in and finding out a bit more, so I came with my sister-in-law.’
Mike says: ‘I had painted this picture in my mind. I was really anti to start with at the thought of coming here, but it couldn’t be more different. I thought it would be a sad place. But it is so welcoming and always happy. We have been here when there has been a family that have lost a child and yet they are part of the activities, they join in and life here carries on.’
When asked how they feel now the couple say: ‘We count down the days before we come to Helen House! We really enjoy the boys, but being able to catch up on sleep and meals in peace is great! Being here also means that we have time together as a couple.’
‘We don’t have family that can easily look after the boys, so Helen House is our only outlet. The boys have no sense of danger, they don’t communicate as other children would, so it is a big responsibility for family or friends to look after them for us for a while. They really need one-to-one care, as they get here.’
‘We have complete trust in the staff, they are our second family. We get fantastic support here and the boys have a fantastic time. They love the sensory room and the spa; they have had music therapy. They know it is going to be a fun place.’
The couple support the Society for Monopolysaccharide Diseases and Helen & Douglas House. Mike has run for Helen & Douglas House and arranged a team to run in aid of the charity for the London 10K in June, 2009.
‘We really need the support of Helen & Douglas House and we think Helen & Douglas House needs us. That is our choice. We want to do things that raise awareness of Helen & Douglas House for people who may need the service, but are not sure if it is for them.’
