You see, Harry was diagnosed with Mowat Wilson Syndrome (MWS) when he was just three years old. MWS is a very rare chromosomal disorder and it means he has severe epilepsy and several other physical and developmental issues. His condition is incredibly serious, and ultimately, it means he may die before he reaches adulthood.
So for Harry, for me and for Harry’s brother Archie, life really is too short.
I know that Harry’s life won’t be as long as I would like it to be and that I’ll never see him get married, get his first job or have his own children. But thanks to Tŷ Hafan, and your support, we’ve already been able to pack Harry’s thirteen years so far with fun and laughter and have created memories that I know we will always cherish.
Then there was the Halloween Sibling Party, which Archie was invited to. My mum and I left the boys running amok amongst skeletons and bobbing apples. When we returned to collect Archie he was soaking wet and beaming.
It can be extremely challenging looking after Harry at times and it can often feel like we’re not that far from crisis point. Harry needs a lot of attention and at home, I can never leave his side. Even going to the bathroom isn’t straightforward. But in spite of all this, and the many trips he has to take to hospital, Harry is always smiling and never complains.
That’s why Tŷ Hafan is so perfect for Harry.
Most people assume a children’s hospice will be a place of suffering, where children and youngsters go to eke out their last days. But step inside and you hear shrieks of laughter and see the most wonderful smiles – you can feel the happiness.
Harry and all the children and young people at Tŷ Hafan don’t know how many birthdays they have left.
But what matters to me is that Harry is able to enjoy as much of his life as he can, and that Tŷ Hafan helps us make the most of every day, every hour and every minute together.
Almost all of the money needed to keep Tŷ Hafan going comes from wonderful people like you. There are many more Harrys out there; many more families like ours. Tŷ Hafan will open its doors to them all, so if you can give anything to help now, please be assured that you are creating memories that will last forever.