Loughborough sibling supports Hospice Care Week

A bereaved sibling is encouraging people to support Rainbows as part of Hospice Care Week.

Organised by Hospice UK, Hospice Care Week runs from 10 – 14 October 2022 and this year, the theme is around end of life care, a service that is provided by our hospice.

We are there to support families when their child is at end of life in many ways including nurse led care, pain management and understanding the family’s wishes – as well as psychological and emotional care and support for everyone involved.

Siblings Amy and Dan Donegani, of Loughborough, were diagnosed with a rare life-limiting condition called Sanfilippo, which is a metabolic disorder.

Amy is now 33. Sadly, Dan died in September 2020 at the age of 28. Their family has been supported by our staff for many years, and recently for end of life care for Dan.

Dan and Amy’s sister, Hannah (34), also of Loughborough, said: “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.”

“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 heart-breaking 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 support 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.”

With your support, we can continue to be there to provide end of life support to families.