"My daughter Alice was born in 1995. She loves dressing-up, pretty frocks, anything pink. Looking back to her birth much of this seems miraculous. The doctors gathered round the new baby, talking of brain damage, heart problems, blindness, hearing difficulties, malformed organs and spinal deformities. We, her parents, had not heard of Goldenhar Syndrome either, but have now become reluctant experts.

On one side of Alice's face, the bones, mouth, skin, eye and ear were seriously damaged by an unknown prenatal event. As she grows older, she will need to go through more, fairly major, procedures. It is not yet clear when this will happen, or quite how good the final cosmetic result will be. Surgical techniques in bone extension and tissue regeneration advance very slowly.

Dealing with the National Health Service has not been easy - getting hold of the facts is the hardest task.

Alice herself has the confidence that a happy childhood can give, but she has definite anxieties. Through the coming years, she can be sure of the love and support of her family. We hope that the Healing Foundation will help bring much-needed support to the many thousands of people who face similar challenges."