Sleaford Town Awards - brother and sisterly love - young Sleafordians overcoming adversity

Penny has Apert syndrome - a rare condition in which a faulty gene causes the bones of the skull to fuse together, not allowing the young brain room to grow. Her fingers and toes are also joined.

She cannot yet walk or crawl and the middle of her face is sunken, so she has breathing difficulties and relies on an oxygen supply and other medical equipment. Penny is full of giggles in spite of her obvious discomfort.

Mum Jess said: “She has had two operations with another two due in the next couple of months.”

A seven-hour operation in January saw surgeons crack open little Penny’s skull to help it expand. Jess said: “They put metal screws in her head which we have to turn twice a day to push the bones apart. She copes with it really well.”

Both siblings competently check her oxygen levels and Bethany will even administer it if needed and will sit with Penny to give mum a break. Both are learning sign language to communicate with Penny as there is a chance she will have learning difficulties and hearing problems.

“I could not ask for a better pair of kids,” said Jess.

On June 9 the school will be fundraising for children with Apert syndrome and the family plan a 100 mile bike ride on September 24 in aid of Birmingham Children’s Hospital. Visit www.justgiving.com/pedalforpenny