WENDY Shires and her family are not sorry to see the back of what has passed for a summer.
For as autumn officially starts, the best time of year is approaching for Wendy and, more especially, her daughter, Hannah Harpin.
The eight-year-old from Lower Hopton has a rare condition which means she could die from overheating as she is unable to sweat. It is called Hay-Wells syndrome, a type of ectodermal dysplasia in which glands don’t function.
Wendy and Hannah’s dad, Richard Harpin 40, face a constant battle to keep their daughter cool, otherwise she could have a fit and die.
Hannah has virtually no hair, no tear ducts, webbed toes and a left eye which doesn’t open properly, An ear canal is missing and she wears a hearing aid. She was born with a cleft lip, but surgery has corrected this.
There is no cure. But Hannah might improve as she gets into her teens.
Now Wendy has chosen to talk about their situation in a bid to stop people staring.
“I want Hannah to be confident when she goes out,” said Wendy, 37. “If people are curious about her condition, ask me. Don’t just stare.”
Her daughter, though, will be very much in the spotlight when her parents marry on September 17 – Hannah’s ninth birthday. Along with her younger sister, Amelia, Hannah will be a bridesmaid at St John’s Church in Upper Hopton.
But she will have a whole new look as she has just got her first wig – a lovely blonde bob provided by the Ectodermal Dysplasia Society.
Before that, though, Hannah has to return to classes at Hopton Junior Infant and Nursery School on Monday.
“It’s easier for me when she is at home,” said Wendy. “I worry she might get too warm at school.”
Hannah was quite definite about the start of the new school year: “I’m not looking forward to going back,” she said.
Hannah is one of only eight in the UK and 30 in the world with her condition. Hannah, though, does her best to enjoy life and has recently learned to ride a bike.
“Some days she doesn’t want to go out because people will stare and kids at school tease her. It is just ignorance. Hannah is so brave,” said Wendy.
“Winter is wonderful for the family. Hannah has so much energy then,” said Wendy.
“You would not believe. We aren’t sorry to see the back of summer.”