Swindon mum inks insect to highlight rare skin condition
11:00am Friday 22nd February 2013 in By Katie Bond, @SwindonAdver007
MUM Clair Puschnik plans to pay a permanent tribute to a charity, to raise awareness of a rare skin condition suffered by her teenage son.
Clair, a childminder who lives in Grange Park, will have the DebRA (Dystrophic Epidermol-ysis Bullosa Research Associa-tion) butterfly logo inked on her skin on her 35th birthday in March, which is in the same year that the charity turns 35.
Her 13-year-old son, Brad, a pupil at Royal Wootton Bassett Academy, was diagnosed with the condition, also known as EB, when he was a baby.
It is a rare genetic disorder in which the skin and internal body linings blister at the slightest knock, causing open wounds.
Sufferers are often referred to as “butterfly children”, because their skin is as delicate as that of a butterfly.
Clair said: “I am absolutely terrified. I have never had a tattoo before. I don’t mind needles during injections, because it is over and done with so quickly, but I am terrified about this.
“I am thinking about having it on my hand. I want it to be somewhere visible, because otherwise it would be pointless.
“I want to raise as much awareness of the charity as possible, so I need it to be seen. If people ask about it, I can share the story about my son and raise more awareness of EB.”
Brad has a mild form of EB and his mother says he does not let it bother him and acts like any other teenage boy.
“He deals with it better than we do, and you would never know there was anything wrong,” said Clair.
“He gets blisters on his feet, which are painful, and since he has been at senior school, he is also getting blisters on his elbows from leaning on the desks, and on his fingers, from where he is writing so much.
“But he deals with it really well and it is mild in comparison to some people. Some EB sufferers have to be fed through a tube to prevent blistering to their oesophagus. Toes and fingers have fused together and some sufferers live in constant pain.
“Brad can’t play any contact sports, like rugby, but he loves football. He just has to wear bandages, because even the shin pads can rub and cause blisters.”
The butterfly design Clair will have etched on her skin will be a Blue Adonis, found in Dorset and Wiltshire. It has been chosen by Brad.
“It is beautiful and we may even be lucky enough to see them around the county,” said Clair.
“Brad chose it because it is his favourite colour and, when I researched the meaning of the word ‘adonis’, I found that it means ‘handsome young man’ and that made me really emotional. It made it all so personal.”
During the charity’s 35th year, it is encouraging people to get involved with fundraising and has made suggestions including baking 35 cakes, raising £35 or putting up 35 posters.
“I decided I wanted to go for a bigger challenge, because the charity is so fantastic and they are working to find a cure for EB,” said Clair.
“I had no idea they were set up the year I was born, so I thought it would be a great way to mark my birthday.
“I assume it will hurt, but I will have to think of the pain my son and other EB sufferers have endured throughout the years.”
Clair’s sponsorship page is at www.justgiving.com/Clair-Puschnik.
DebRA is at www.debra.org.uk.