CHANGE ATTITUDES AFTER HEARTACHE AT SCHOOL
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David has a rare genetic skin condition and was bullied by other children who didn’t want to touch him as they wrongly thought he could be contagious.
He’s only 11 but the brave youngster, from Denny, Stirlingshire, has faced cruel taunts and been called names.
David copes with sore red skin that is easily damaged and forms painful blisters. His clothes will often stick to him and he’ll have to soak them off in the bath to avoid tearing off his fragile flesh.
David has bullous ichthyosiform erythroderma (BIE), which affects fewer than one in 100,000 people. There’s no cure – only creams to try to help alleviate the painful symptoms.
He can’t play football or rugby because his skin would rip off but he has a special padded seat so he can ride his bike and enjoys playing on an Xbox.
Now he wants to raise awareness of his condition and encourage people not to judge others just because they may look different.
David has joined a youth action group with the charity Changing Faces. He said: “We can only change one person’s attitude at a time and I want to be able to help do that.
“I would say my skin has given me my personality. I am cheery and happy, I like to be out and about and in the company of others. I am not contagious and no different to anyone else.
“For anyone else struggling with a visible difference, I would remind them that no one is a monster,r, we are all just humans. If you ou have some friends, stick with them.
“I f someone is unkind, remember you are the better person and we are all fabulous in our own special way.”
David hopes one day to become a scientist to work on finding a cure. He added: “I’d like to try to find ways to stop people going through this pain and find a cure for my condition and other skin conditions.”
David and his fami ly have been supported by Changing Faces, a National Lottery-funded charity for people with appearance-altering marks or scars.
Before their son was born, his parents Gail, 42, an early years officer, and Michael, 45, a warehouse clerk, desperately wanted a child. As Michael has BIE, they knew a baby would have a 50/50 chance of inheriting it too.
Gail said: “When David was born, Michael noticed that the skin on his shoulders was moving. He told the midwife and asked for a doctor to be brought in. The midwife was adamant that there was nothing wrong and wrapped David in a towel.
“However, when the towel was removed, some of his skin came away and that was when they started to listen to Michael.
“David’s skin was white and looked like tissue paper and his bottom was red raw.”
Gail said she saw beyond Michael’s skin condition when she met him – and she hopes others will see David in this way too.
She said: “You can notice it straight away but I was brought up to treat people for who they are – it doesn’t matter what their outer shell is like. I realised Michael was one of the good guys.”
She said times have changed since her husband was born when doctors gave him two days to live as they didn’t understand his condition. And she now realises people are becoming more accepting of visible differences.
But Gail has found it hard seeing David cope with bullying and the pain of the condition. The couple decided against having more children and adopted second son Jack, who is five.
She added: “As a baby, David had to be nursed on a memory foam pillow and had to lie on a sheepskin rug so it wouldn’t tear his skin. He had to wear his clothes inside out because seams would rub his skin and he had constant baths.
“Even going on the bus, if it jolts and he’s bumped, it can cause a blister. The seatbelt in the car can cause blisters as well so we have extra padding.”
But the couple have given David the strength to cope. “If he gets hurt or sore, he learns,” added Gail. “He tried rugby but came home bleeding and announced, ‘I don’t think rugby is for me.’”
David said: “I first realised I looked different when I was in nursery. I got a lot of weird stares from other children and adults.
“I didn’t know why kids didn’t play with me but I knew I only really had four friends then.
“The first few years of primary school were hard. The other children called me names such as cornf lakes, scabby, snowflake and flaky.
“One boy would keep picking on me, pointing out the f lakes on my jumper in a nasty way. In activities such as dance lessons, no one would hold my hand. People used to treat me differently until I was so sad I would not go to school.
“So thet teachers told my classcla all about me and mym condition
and let them see
Sunday Mail
and touch my creams. When I came back, everyone knew all about me and I felt a lot better about myself.
“I have a lot of friends that now want to be my friend because they like me – before I just had friends that felt sorry for me.
“Outside of school can st i l l be challenging. Once in the play area at McDonald’s, a woman made me pick up crayons from the floor rather than let me use the new ones for fear I’d be contagious to other children, which I am not.
“Also at swimming, I get stared at a lot as my skin is really dry. The redness is due to me being unable to control my body temperature very well and also being unable to sweat properly.
“My condition means I have blisters all the time and can’t do sports such as football or rugby because I just get hurt and my skin will rip or tear.
“I can get really sad and upset when people treat me differently and look at me as though I’m a monster. I am getting better at ignor ing them and trying to not let the stares and name-calling get to me as much as it used to. It’s definitely made me stronger.
“I’m always sore and I did used to wish I never had it. I still don’t want it but I’ve accepted it as part of me.
“And I’d love to try to make everyone more aware of people with conditions like this.
“No one is the same as anyone else. Everybody looks different so why treat these people differently as well?”
Bullous ichthyosiform erythroderma (BIE) affects less than one in 100,000 people.
It leads to inflamed scaly skin with fluidfilled blisters that may become infected.
There’s no cure – only creams to try to help alleviate the painful symptoms.