Thomas’ story
Thomas was Claudia and Gareth’s longed for second child. An energetic and happy boy who started crawling at 5 months, they saw him as the completing their family, along with older sister Estella.
However when Thomas started walking, they noticed that he wasn’t very stable on his feet, and when he began to miss some developmental milestones they became concerned and visited their GP. After numerous tests they were devastated to learn that Thomas had a life-limiting, genetic condition called Tay-Sachs disease which stops the nerves from working properly. Thomas was only 23 months old when they found out at the end of November.
That first Christmas was incredibly hard. “The fear of not knowing how many more Christmases we had with Thomas was devastating,” explained Claudia.
After Christmas, the family knew they needed support, and Shooting Star got in touch with them shortly afterwards. The family were invited to spend a weekend at Christopher’s, our Guildford based hospice, as a family.
By that point Thomas was no longer walking, and was no long able to see, but saddest of all for his family was the fact that he had lost his ability to smile and laugh. but while at the hospice his family were still able to see the contentment on his face.
Being at the hospice provided support for the whole family, giving them a chance to spend precious time together and enjoy things like our hydrotherapy pool. Estella also had the opportunity to meet and make friends with other children in a similar situation at siblings day, and was able to be comforted by staff when she was having a tough time.
Thomas sadly died in September 2023, just before his fifth birthday. “We’d taken him to hospital as he was struggling with his breathing and the community nurses from Shooting Star visited and provided Thomas, and us, with a lot of support and comfort. He was peaceful and that, for us, was very important. We never wanted to see Thomas struggling in any way,” Claudia explained.
After Thomas died he was transferred to the bereavement suite at Christopher’s, allowing his family, including his sister and new little brother Daniel, the time to see him and say goodbye. Speaking about that time, Claudia said, “The support that we got from the whole team was just what we needed in that very dark time. Shooting Star helped us make some very special memories. We have beautiful casts of Thomas’ hands and feet; they had so much patience and time for us. We’ve also been to Memory Day and have a leaf with Thomas’ name on in the memory garden which we can visit whenever we want to. They have been our light in a very, very dark tunnel.”
Help children like Thomas
This year other families like Thomas’ will find themselves facing a sad and uncertain Christmas. Your support means that they won’t have to go through it alone. Help us to be there for every family that needs us.
