Finley's story

Finley was born with Apert syndrome – a rare condition that causes a range of health problems including craniosynostosis which affects the skull.

In craniosynostosis the plates of the skull fuse together too early, while the baby is still in the womb. The head shape is distorted and, as the child grows, there is restricted room for the brain. This can lead to pressure within the skull, and the need for major surgery.

In Apert syndrome, craniosynostosis is especially complex and Finley, now nine, has experienced hearing, sight and breathing problems, and issues with his jaw.

When he was just 10 months old, surgeons painstakingly dismantled and reshaped Finley’s skull, creating a new forehead. Before this, his eye sockets were so shallow that he couldn’t close his eyes.

“We had to place our child in somebody else’s hands. It was terrifying,” Diane reflects. “But if Finley had been left to develop pressure on his brain, it would have affected all of his development.”

Further surgery when Finley was four was particularly traumatic: “He was in a lot of pain and kept saying ‘help me, help me Mummy’. It was the hardest time of our lives as parents,” Diane says.

Finley, now nine, attends mainstream school and is doing well. But he is likely to need more operations in the future.

Research that Action is funding could spare children from repeat surgery and make less invasive procedures work better – this means a lot to families like Finley’s.

“With any surgery there is risk,” says Diane. “For children like Finley, because he has Apert syndrome, he has to have lots of other treatment – he has had 25 general aesthetics in his life so far.

• About 350 children are born with craniosynostosis every year in the UK
• Action is also funding research into genetic causes of this rare condition.