Lucas was a much awaited baby, born with a rare genetic condition called spinal muscular atrophy (SMA) type 1.  This causes degeneration of muscles over a short time, meaning that babies lose movement of their limbs, will never be able to lift their head or sit up, develop feeding and ultimately breathing difficulties, leading to a very short life.

This is what happened to our beautiful boy Lucas.  He died on the 20th January 2017, after just 4 months and 21 days.

Although his life was short, he had a huge impact on so many people.  He was bright eyed and full of smiles and gurgles, and was deeply loved by all who met him.  For such a youngster, he knew his own mind, and had already started telling us which music and cartoons he loved.

He smiled every day, and loved dancing (which involved us moving his arms and legs), but most of all loved lights.

Claire house hospice to home team had been involved in his life from the point of diagnosis. They supplied him with fibre optic lights, lots of flashing sensory toys and allowed us to take him for hydrotherapy, (which we were able to turn in to a disco room, with music and lights, while we swam), he loved this.  They have been a great source of support to us at home, and helped us create some amazing memories with Lucas.

Before Christmas 2016, Lucas developed bronchiolitis, and we ended up needing support with his care, so we went to Claire house children's hospice.  We were reluctant to do this as we had the impression that it meant the end of his life.  Instead, they helped us manage his symptoms brilliantly, taking the burden off us, so that we could enjoy him in the day, without being exhausted.  Lucas recovered enough for us to be at home for Christmas, and we are so greatful that we got to spend time with family.

Soon after Christmas, Lucas became unwell again, and we went back, much more willingly, to the excellent Claire house.  We spent nearly 3 weeks in there with Lucas.  The hospice to home team remained involved and managed his symptoms well, keeping him comfortable, and keeping him smiling.  The in house team are outstanding. They were a constant support for us in such a difficult time, proving care for Lucas, as well as keeping us fed and watered and confident in their abilities.  They showed guenuine love for Lucas, which was beautiful.

Lucas died peacefully due to the care of Claire House, and we will be forever grateful to them.  Claire house is a children's charity, and rely on the good will of people to keep their doors open.  They provide excellent care, and help make memories for children and their parents, to help make the most out of such short lives,