A Guide for Family Caregivers of Loved Ones with Rare Diseases
by Toni Mathieson
We were always honest with our daughter’s big brother, responding to his questions about her illness candidly, but carefully. We wanted to be in control of the information he received, however in this internet age it was difficult to do. We explained that the information on the internet may not necessarily relate to his sister as the disease was different for everyone.
He was ten years old when she was diagnosed and he certainly asked a lot of questions! We encouraged him to talk to us and to the wider family as much as possible and we took every opportunity to involve him in creating special memories he could treasure into the future.
They were so cute together - and very close – he helped greatly in caring for her and could always make her giggle! It is now seven years since we lost her, however he is comfortable in talking about his sister and she will always be part of his, and our, lives.