The first 3 years of his life were challenging to say the least, says Luke. Constant trips to the Royal Cornwall Hospital and Bristol Children’s Hospital with numerous different medications – always seeking that magic combination – took its toll on the whole family. 
And then in 2016, they found Little Harbour….
Luke, a firefighter, said the team there had helped him and his wife Angie through some of their toughest times.
“We can’t put into words how amazing not only Little Harbour is, but also how incredible the staff are,” said Luke.
“Seth absolutely loves the hospice and all the facilities it has to offer, particularly the hydrotherapy pool, sensory room and making melodies with Music Therapist Richard.
He has built many relationships with the staff over the years, and all the time, been given the very best medical care we could wish for.
Making precious memories and having new experiences really is a theme for the family when they stay at Little Harbour. Seth had never been to the beach before as he doesn’t travel well and getting in and out of vehicles can cause him to go into spasm. But while staying at the hospice, the family made the most of being so close to Porthpean beach and were able to enjoy the sun and sea air, have a paddle, and feel the sand between their toes.
When they first started visiting Little Harbour for short breaks Luke and Angie found it difficult to handover the care of their son to the team at the hospice. They knew Seth’s needs and quirks inside out and were understandably nervous to leave his care in the hands of new people.
But after regular visits, the couple have gained great trust in the Care Team and now feel comfortable to enjoy vital respite themselves, be it a meal out together or a round of golf at a local golf club.
Luke also said that knowing the hospice was there for them, every step of the way, came as a huge comfort.
“I’m a firefighter. People think I’m strong, that I can deal with anything! I can run in to a burning building and save people. I’m brave and fearless!
But when you know your son has a life-limiting condition, there are many times when I’ve not felt brave or strong enough, and times when our family life has been filled with fear.
“That’s when the hospice has made all the difference – being there with us every step of the way, carrying us through the uncertainty, helping us to see through the smoke and the fog of so many questions and giving us precious family times.
When we are at the hospice we don’t have to be brave, we don’t have to be strong – we can simply be a family.
"We can stop and sleep, we can eat a meal together or drink a whole cup of tea without it going cold! We can laugh together and we can cry. We feel safe no matter what.”