Rebecca Hitchen's daughter, Lucia, was born with Goldenhar Syndrome - an umbrella term for a wide range of soft tissue and bone irregularities. However, she said when she tried to research the ...

When my twins were born I had no idea that Harry had a rare craniofacial condition, Goldenhar syndrome, which effectively means that the left-hand side of his face had never developed. He also has ...

The children's illnesses include Duchenne muscular dystrophy and Goldenhar syndrome. Parents and siblings are joining in with the activities, which also include raft making, fire lighting and bush ...