Holly’s story

Hello, my name is Sue George. I am Mum to Emily, Holly and Abbie. Holly has a life-limiting condition called DiGeorge Syndrome.

This genetic disorder can come in many shapes and sizes, but for Holly, it is a life-threatening condition. She has learning difficulties, severe leg cramps, heart problems, difficulty breathing, and has to have a Tracheotomy tube to help her breathe.

However, we have been privileged to experience first-hand the difference that leaving a legacy has, from a supporter from Wooden Spoon Chilterns, on a family like ours.

Having a child with a life-limiting condition makes a different family dynamic. Any family in my situation will tell you that the siblings often miss out as they need to spend more time with the child that is ill. They don’t know if she’s going to be around, and the pressures that brings are enormous.

Hospices are not unhappy places. They’re places of joy and laughter. They’re places where families go to make memories, that sometimes we can’t make at home, because we’re having to nurse, or do some unpleasant medical things.

At Alexander Devine Hospice, we can hand that responsibility over to a nurse so we can just be Mum and Dad. Fantastically for Holly, a new bedroom in the children’s hospice will mean that she can have sleepovers. She just wants to have social interaction with her mates.