The non-uniform day for a donation at William Alvey Primary School raised £700 for Birmingham Children’s Hospital craniofacial team as well as spreading the word about Apert Syndrome, which affects just one in 100,000 children, including Penny Barratt. She is the little sister of Bethany and Levi Barratt who attend the school and help their mum Jess care for Penny.
Apert Syndrome is a genetic disorder characterised by the premature fusion of skull bones, preventing the skull from growing normally and affects the shape of the head and face. In addition, fingers and toes can be fused together.
Mrs Barratt sold wrist bands and gave a talk about Penny’s condition.
She said Penny has had two more operations in the last couple of months (one to remove screws from her skull and one to separate two of her fingers) and another in the offing will separate more of her fused fingers.
The family and about 16 other cyclists, are planning a 100-mile bike ride on September 24 in aid of the same hospital, starting from Sleaford Town Junior Football Club.
In total Jess said they hope to raise £5,000 and she and Bethany will be a doing a Glow in the Park 5k fun run at Birmingham towards it too.
To donate just go to www.justgiving.com/pedalforpenny