Our thanks to the people who describe their very personal experiences in these pages.
If you would like to contribute to these pages, please click here.
Families talk about their experiences of diagnosis and caring for their babies.
Young people, families and adults talk about how they manage their condition, overcome social and institutional barriers and achieve their ambitions.
Adults and families talk about their experiences.
Families talk about their experiences of getting a diagnosis and caring for their child.
You can read families' experiences of grief and how they cope with bereavement, as well as people's personal tributes and memories of those they love.
We are keen to hear from anyone who would like to contribute their experiences to these pages.