By Claire Elliot

HER skin is so fragile that Hannah McKandie has to be wrapped in bandages from the neck down every morning.
 

The slightest touch, including a hug from her mum, can leave her with agonising blisters and peeling skin.
 

Even going outside in the wind is a risk in case dust gets in her eyes, causing severe blistering and temporary blindness.
 

But the 11-year-old, who receives around 30 syringes of medication a day, has battled hard to lead a normal life and is looking forward to starting secondary school next month.

 Hannah, who attends mainstream school, was born with recessive dystrophic epidermolysis bullosa (EB), a rare genetic condition which has left her with skin as thin and as fragile as a butterfly’s wings.
 

Even as a baby she could never be picked up and hugged tightly by her parents, Amanda, 38, and Gordon, 40, who live near Fyvie, Aberdeenshire.
 

She is so delicate she has to sleep on a silk pillowcase just to protect her skin from tearing during the night
 

Mrs McKandie, a nurse, said: “If it was me, I’d be screaming and cursing. But Hannah takes it all in her stride.

 “She had good days and bad days but on bad days she doesn’t show it outside this house. If you ask her how she is feeling, she’ll say ‘fine’.
 

“She copes brilliantly. But we can’t just get up in the morning and go. Everything has to be planned.”
 

Hannah’s first three hours of the day are spent being bandaged from the neck down to protect her skin and cover up dozens of open wounds caused by blistering.
 

There are thought to be only around 50 children in the UK with the same severity of EB as Hannah, whose parents and sister Natalie, 10, are all carriers of the condition.
 

It even affects her internal body linings, which means she cannot eat solid food and has to be fed daily through a tube in her stomach.
 

She also has to have her throat and mouth stretched at London’s Great Ormond Street Hospital for Children, where she has check-ups, tests and therapy every six months.
 

Mrs McKandie, said: “Generally her skin is continually breaking and healing and because of that process it is tightening and webbing over her body.

“Her hands and feet are the main visual things but her mouth narrows and has to be stretched and her tongue is fixed to the bottom of her mouth so she can’t lick her lips.
 

“When she gets blisters in her eyes she is temporarily blind.”
 

Her movement is also restricted and she relies on a wheelchair to get around as walking is too painful.
 

Mrs McKandie, however, said she and her husband, have always strived to help their daughter lead as normal a life as possible.
 

Hannah even has a special protective suit that enables her to go swimming.

 It is made from material worn by offshore workers who go into hazardous environments.
 

Mrs McKandie said: “The first time she got it she wanted to try it out straight away.
 

“We lifted her into the bath with her sister and she just thought it was great.”
 

She added: “We just treat her exactly the same as her sister.

“Obviously we can’t tell her to do certain jobs around the house because she’s not fit to do it.
 

“But she tidies her own room and she gets told off if she doesn’t do as she‘s told.”
 

Hannah loves reading Roald Dahl and Enid Blyton books, listening to her favourite pop band McFly and playing computer games.
 

And like most children her age she is looking forward to seeing the latest Harry Porter film at the cinema this week.
 

The youngster even managed a family holiday to Alton Towers last week and was able to enjoy on one of the water rides, wearing a special rain coat.
 

Her dad, who took voluntary redundancy at the end of last year to spend more time with his daughter, said: “When we go on holiday it’s like a military operation.
 

“But if we didn’t do it we would just end up feeling sorry for ourselves.
 

"We don’t wrap her up in cotton wool. We just want her to lead as normal a life as possible.”
 

When Hannah starts secondary school, however, she will be allowed to make her way to classes before the bell rings to avoid unnecessary knocks to her body in the crowded corridors.

 She also needs a full-time carer with her at all times to administer medication and change bandages.
 

But a bubbly Hannah said she was looking forward to her first year at Meldrum Academy.
 

She said: “I like art and reading but I’m looking forward to science because I’ve never done that before.”

Her mum said she is “more grown up for her years” and is keen to raise awareness of the condition and DebRA, the charity which is dedicated to raising funds for research into EB.
 

Over the years family and friends have helped to raise around £30,000 for the charity.