Little did we know that 20 years on we would be looking at the prospect of a referral to Martin House when our beautiful boy Harry at the age of 3 ½ years was diagnosed with an ultra rare life limiting disease – Niemann-Pick type C. 
We had to come to terms with the fact that the future we imagined, of our children growing up had been ripped away. This disease would rob Harry of every skill he had learned and been born with, until he wouldn’t be able to walk, talk, or swallow and eventually it would take his life. We later learned that one of beautiful twin girls, Grace, also had the same illness. When the NPUK Clinical Nurse Specialist, Jackie Imrie, asked if we would like to be referred to Martin House, we were very uncertain. We had preconceived ideas and didn’t feel it was the place for us and our vibrant, mischievous Harry, Grace, and Emily. We agreed to meet the Community Team, Louise, Hilary and Joanne who came to our home with crafts and games. Over the course of a few months, we started to get to know a little about what Martin House do and how they help families like ours.
On our first visit we realised how wrong we had been. Martin House is a truly wonderful place – a home from home for families. It’s a vibrant place, filled with love, families, such caring staff and happy children. It’s a place where we can forget about NP-C for a short while. Now when we visit I always feel we are met with a great big hug, the staff of course are amazing and the girls have an amazing time, playing music, doing crafts, baking, playing in the sensory light room and making friends with siblings and other families. Emily attends a Time 4 Us sibling group 3 times a year, where she can be with other children in the same situation as her.
Now, we take one day at a time and try to do lots as a family. We always have something planned, it’s important that we make memories for Emily. Martin House help us do that.
This year marks their 30th anniversary, and now they are looking to the future whilst thinking how they can tailor their support to families over the next 30 years. Martin House is one of the few hospices that have a teenage lodge. Thanks to research and new breakthroughs in medicine, children are living longer and we long for the day that Grace can visit the Lodge and have a little bit of independence from us.
Martin House costs £6m a year to run and relies totally on grants, donations and fundraising from the community to help families across the Yorkshire region.
You can learn more about Martin House, and the fantastic work they do, at their website here.
