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Denny youngster has price to pay for play
The Greens: Michael, Gail and young David
Little David Green loves to run around and play like other kids his age. But the four-year-old pays a price for his fun that others don’t.
The nursery pupil from Denny suffers from a very rare genetic skin condition called Bullous Ichthyosiform Erythroderma (BIE), which means his skin easily rips and tears through friction, causing painful blisters.
Due to their fragile skin, young people with BIE are commonly called ‘butterfly children’.
David’s condition is not life-threatening, but there is no known cure and it requires a strict regiment of treatment to ensure that it doesn’t worsen.
It’s a constant source of worry for mum Gail (34) and dad Michael (37) - but they don’t have to look far for reassurance that David can still grow up and lead a full and happy life.
Michael was also born with BIE but still works full-time and enjoys keeping active. “You just have to get on with things,” he said.
“It affects you all over - from head to toe, and it leaves you feeling very itchy. I try not to let it stop me enjoying myself.
“It is classed as a disability. I work in an office environment - I couldn’t do any job that required heavy lifting.
“When I was younger, my pals knew not to make hard tackles when we were playing football. One kick on my shin and it would have taken the skin clean off. Rugby was a total no-no. But swimming is very therapeutic.”
BIE affects around one in every 250,000 births. Regular baths and treatments must be taken. For Gail, it’s a routine she’s become familiar with.
“It’s hard to see the pain my husband and four-year-old son go through on a daily basis,” she says.
Support for kids with BIE is offered by the Dystrophic Epidermolysis Bullosa Research Association - or DEBRA for short.
It’s provided welcome help to the Greens.
“There’s not being millions of pounds spent on researching a cure. DebRA is a charity that relies solely on public donations as it is not government funded,” explains Gail.
“The aim of the charity is to help children and families with advice on dressing and creams and to provide support for those families.”
To help raise awareness of DEBRA, and the condition it supports, Gail has organised a charity tattoo fundraiser next month. Small butterfly tattoos - as well as other small designs - will be on offer from a local artist.
The event, which is strictly for those over-18, will take place at Studio 23, a hair salon in Dunblane, on Sunday, August 26. For more details, email g.green918@btinternet.com.
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Weather for Falkirk
Saturday 18 May 2013
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