Two-year-old Mason lives with his big brother Riley, five, Mum Emma and Dad, Kris. When he was born, he was diagnosed with NKH a rare genetic, metabolic disorder. There is no cure and Mason was put on life-support and his parents were told he would not survive.  

“We were given the option of having his tubes removed in hospital or coming to Little Havens. We’d heard of it, but we had no idea what to expect.” Emma, Mason’s mum, said, “They said they could support us as a family and whilst Kris and I knew we were strong; we wouldn’t be strong enough for Riley. Little Haven helped us grieve, because we did grieve for Mason while he was still alive, and they helped us make memories. We’ve got hand portraits at home, and they took photos of us all together.” 

Once Mason was taken off life support, he started breathing on his own.  

Emma continued, “It was amazing. But at the same time everyone was sort of looking at each other thinking, what now?” 

“All of our family were allowed to come to visit and one day they cooked us all a roast and we were able to all sit together and it just made us feel like we were a normal family. The care team would be caring for Mason and Jake from the Care Team would be keeping Riley distracted talking about Pokémon.” 

Mason, now two, continues to be supported by Little Havens with care in the hospice and the community. 

“At first, I was really worried to go out with Mason in case he had a seizure that we couldn’t stop, what are we going to do? But being able to come to the gardens at Little Havens was a place we could go to that felt safe. They’ve got Doctors and nurses here who are all ready to support us.  

“We don’t know how much Mason can see or hear but we know that he reacts to light, so he loves the sensory room and Riley likes it too. There aren’t many places we can take them that both boys enjoy. Equally, if we’re at home and Mason is having a bad day, we need Riley to be quiet, at Little Havens there’s plenty of space so we don’t need to worry.  

“Life without Little Havens would be difficult we’d probably feel quite isolated, they’re the only people who have been able to bring us together as a family. Mason has a really good quality of life at the moment because they make sure enough is accessible. 

“There will be a day Mason won’t be with us, but we will always have the memories, especially the ones Little Havens helped us to make. Other families in the future deserve the same help we have had.” 

“By fundraising for Little Havens, you can help families like ours to live to their fullest potential. Little Havens isn’t that doom and gloom place you might expect, it’s magical.” 

To find out more about how you or someone you know would benefit from the care at Little Havens, click here.

If you would like to donate to Little Havens please click here.

Published in 2022