30/09/2012 14:37 BST | Updated 22/05/2015 06:12 BST

Jeans For Genes Day: My Son Was Bullied For Looking Different

Jeans for Genes Day: My son's bullies broke my heart Jeans for Genes

Ashley Carter was born with Treacher Collins syndrome, a genetic condition which affects the development of the bones in the neck and head. Ashley, 12, has no ears or cheek bones, and has undergone over 30 operations, including surgery where his jaw had to be broken every day for two weeks to make his airway big enough for him to breathe.

Despite all that, Ashley attends mainstream school, and is confident, outgoing and full of life. Which makes it all the more heartbreaking to hear that at primary school he was bullied for his condition.

His mum Louise has agreed to speak out about the agony she and husband Michael went through because of Ashley's bullying in order to raise awareness for genetic conditions like Treacher Collins.

"The last 12 to 18 months of his primary school were the worst.

"We were going in and out of the school and eventually, it came to the point that we said 'if nothing's done, then we're going to take action ourselves with the parents'. Only then did the headmaster do something.

"Ashley was called names and pinned up against the walls by the bullies. These boys took his things from him, and tried to trip him up in the corridors. This went way beyond the more obviously name calling, which was an everyday occurrence for Ashley.

"Ashley had always loved school, but it came to the point where he didn't want to go, and would come home crying.

"Obviously he knew he looked a little bit different - but in his eyes he's was just like everybody else, and so why would they do that to him?

"The bullying wasn't just confined to school. The two lads who were the main perpetrators were abusing him outside of school too. We live two minutes from the local park, but Ashley would not even go there for fear of seeing them.

"He had loved going to a little local youth club on a Friday night, but then they started going and made his life hell there too. .

"Once they chased him home. He was absolutely sobbing his heart out, really sobbing his heart out.

"I went looking for the lads, I knew roughly where they lived but I couldn't find them and I don't know what I would have done if I had. Marched them home to their parents, probably.

"I was so angry that I told the headmaster that he had to do something. I knew that out of school it was hard for him to intervene, but I was adamant that the lads needed to be made aware of what they were doing to him.

"He called the boys' parents in, and one of the them was absolutely devastated that her son was a bully, and what he had been up to.

"Things only began to get better for Ashley after that. The teachers changed his class. I didn't agree with it at first because I thought they were taking him away from the bullies – not dealing with them. But in hindsight it worked and he was much happier.

"As a mum though, it's heartbreaking to see your child going through this, especially when you're talking about a child who has already been through so much.

"I have cried endlessly over the bullying, but obviously never in front of Ashley. My husband Michael and I have to be strong for him.

"I admit there have been days, right from day one, where I've wanted to hide him. That sounds really bad, but just keep him with me and protect him. Obviously that's not the right thing to do, but as his mother I have to try to protect him.

"But what do you do? Keep him under your wing for the rest of their life?

"Ashley has started secondary school now. He's enjoying it and doing well.

I just wish people would educate themselves more about issues like Treacher Collins, and that schools would raise more awareness amongst their students.

"Jonno Lancaster, who has Treacher Collins and is a successful TV presenter gave a talk to Ashley's primary school and the children were all asking him questions and were really intrigued. I'd love for him to talk at Ashley's new school.

But really, I just want to promote awareness of the syndrome and the affects that bullying can have on life, full stop."

Jeans for Genes day is on Friday 5th October.