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As a children’s charity, it’s our privilege to meet families from around the UK who generously share their stories with us. It is endlessly moving – and inspiring – to hear about the heartbreak and hope that colour family life when a child is very unwell or living with a disabling condition, or when a precious baby is born too soon.
Sharing family stories helps us to show what it is really like to cope with severe worry about a child’s health and their future wellbeing, the complex mixture of shock and relief that may surround a diagnosis, and the day-to-day demands of caring for a sick or disabled child.
By describing their own experiences, families have helped to explain the need for vital research we are funding into a rare, life-threatening heart disease and the tragically fatal condition juvenile Batten disease; disabling conditions such as uncontrolled epilepsy and cerebral palsy; the potentially life-threatening pregnancy complication pre-eclampsia; and the dangers that face tiny, vulnerable babies born prematurely.
We truly appreciate the support of all the families we’ve worked with this year, and we’d like to wish everyone a happy Christmas and a peaceful new year.
