Emily’s Story

My Story
(written by Emily McDermott)

I’m Emily and I was born with a unilateral cleft lip and a small cleft in my gum. When I was 3 months old I had my first operation to repair my lip and I also had reconstruction of part of my nose.

When I was 2, I had another operation to try and deal with the lumpy scar tissue in my lip. Luckily I was too young to remember any of that.

I know I’m different, but I’m me. Sometimes people ask me what happened to my lip and some adults have been really rude about the way I look. That doesn’t make me feel good, but I’m still practicing answering people’s questions and ignoring people who are mean.

I became a Scar Free Foundation Ambassador in 2019 because I have been hearing about the fantastic work they do for many years. This is because my mum has been an Ambassador since 2011.

Rachel’s Story

Emily was born with a unilateral cleft lip. Until last year, she was largely unaware of how she looks different maybe to her friends. She’s now eight and she started to feel as though people were staring at her more. The unkind things that people have said about her appearance and her scar have largely come from adults.

As a parent I would like to protect her from having to have any more scarring in the future. However, that’s quite difficult because I know at the moment that’s not possible. But for future generations there will be mothers sitting there thinking about their daughters in a different way to the way I am now.

I am on The Scar Free Foundation’s Research Council, which is an incredibly rewarding experience. At first, I was asked to sit on the advisory panel for the Cleft Collective. After four years, I was invited to join The Scar Free Foundation Research Council instead. I jumped at the chance – I thought it was a great opportunity for me to be involved in even more of the Foundation’s work, not just looking at cleft, which is obviously what my family’s directly affected by, but looking at what was going on with burns, with tissue regeneration.

Our responsibility is to make sure that the Foundation is funding the right things. And the right things in my mind are things that will improve the lives of people affected now and in the future with scarring.

I’ve enjoyed discovering more of the science and it never fails to amaze and excite me might happen next. I’m one of two Patient Representatives on the Council, which can feel intimidating. There are very clever and experienced surgeons and scientists on the council – they obviously know their stuff! I have to remind myself that I know what it’s like to support a young person with scarring, and that’s what I bring.

Research needs to make improvements for the people it’s designed for. Without sense-checking with people who are the ‘end user,’ then there’s a danger that it’s not going to deliver all that it needs to.

The possibilities are what’s so exciting about this. We’re not accepting that the way things are now is the way they must always be. Instead, we’re using research funds to enable some knowledgeable, specialised people to discover more. That is something that is so exciting to be a part of.

I can’t discover it myself, but I can play my part so that others can make those breakthroughs. The ambitious aim to achieve scar free healing within a generation I believe is possible because of this charity and because of the way that it connects different areas of research.