Hannah’s siblings, Amy and Daniel, were diagnosed with a rare life-limiting condition called Sanfilippo, which is a metabolic disorder and has a usual life expectancy between 10 and 20-years-old.
Sadly, Dan died in September 2020 at the age of 28. Amy is now 32.
Hannah (34), and brother, Josh (31), have been a part of our Sibling Services since a very young age.
“My first memory of Rainbows was when as a family we came to stay for a weekend. I must have been about seven or eight-years-old, and looking back my memories are that it was really great fun,” said Hannah.
“As children, Josh and I were involved with the Sibling Support Group. We went on lots of trips and there was a great weekend where all of the siblings slept over at the hospice. Being part of that group was really special – to be able to be with other siblings who were experiencing similar things in life. You could just be friends and have fun, without having to explain everything, but at the same time having a shared understanding of what having a sibling with a life limiting condition was like.
“Until Rainbows, I didn’t know anyone who had a sibling with needs like Amy or Dan’s. When I look back, in one sense it was my normal and I didn’t know anything else, and I have so many happy memories. But at the same time there were really tough times too. Life often needed to be centred around Amy and Dan, and I often felt a self-imposed weight of responsibility and need to help. Rainbows did such a great job of making us as siblings feel special too and helped me to just enjoy being a child and having fun.
“Dan passed away in September 2020. We were all able to stay at Rainbows together as a family for Dan’s last three weeks, and the care we received as a whole family was incredible. As an adult sibling I was fully included and that meant so much. The care team were so amazing. They helped us walk through one of the most heartbreaking times of our lives, and enabled us to make precious memories along the way – memories I will treasure forever.
“After Dan passed away I had some bereavement counselling sessions with the Rainbows Sibling Support Worker. Sibling grief can often be under-acknowledged and it meant such a lot that Rainbows gave me this support. It was so helpful to have someone to speak with who knew the right questions to ask to help me explore my feelings and the uniqueness of my sibling grief journey – especially over that first year and those first milestones.
“At Rainbows, the team really take time to get to know and understand your situation. I have always felt valued and supported as a sibling in the uniqueness of my experience. Rainbows has done so much for us and I can’t quite put it all in to words.”
At Rainbows, the team really take time to get to know and understand your situation. I have always felt valued and supported as a sibling in the uniqueness of my experience. Rainbows has done so much for us and I can’t quite put it all in to words.