Stanley suffered from a rare genetic condition called Tay Sachs. Diagnosed at just 14 months old, he very quickly developed complex symptoms including frightening seizures. Stanley’s care needs were huge – his family looked after him around-the-clock, a daunting prospect for any parents, not least for those coming to terms with a devastating diagnosis. Children with Tay Sachs are not expected to live beyond five years old.
When Stanley’s family were introduced to their local children’s hospice, Little Bridge House, it gave them a lifeline. Mum Emma says: “As well as the care and support for Stanley, the sibling support team at Little Bridge House were incredible. Stanley’s brother Fynn really benefitted from this service. He would go out for days out with the hospice staff, hang out with the other siblings. He was completely entertained throughout our stays. It is one of his favourite places.”
Stanley’s family would visit the hospice every three months for respite stays and towards the end of his life they would visit for emergency symptom management stays. “We would get to the point where, as a family, we were so burnt out and needed support and respite.”
Stanley died at Little Bridge House when he was four and a half, in June 2019. His family stayed there for a week after Stanley died and it is a time that will remain precious to them all. Emma says: ‘We slept in a bedroom close by so we were always with him. This time was so important to us as a family. It enabled other family to visit him because his death was unexpected in a way. People didn’t know that the last time they saw him would be the last time.”
Even beyond Stanley’s death, the hospice has been a crucial part of family life, helping them all to deal with their grief. Emma says: “There is bereavement support and I receive a call every two to three weeks from the hospice to see how we are. There is somebody there 24/7 at the other end of the phone if I need it.”