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Zoe Hilton Webb

I would like to introduce myself. I have Apert syndrome and as a result, have lived my life with a craniofacial condition. Although things have not always been easy, I have never let my disabilities get in the way of me achieving things. I managed to leave school with enough good GCSEs and moved onto college where I felt I really pushed myself with my learning. I am now just over a year from completing my degree with The Open University.

I met two of the most significant people in my life, Hannah and Sasha, as a result of being a patient at Great Ormond Street Hospital. Like Hannah and Sasha, I enjoy rock climbing and skiing and if it was not for the example they both set, I would not have challenged myself to the extent that I have.

As a young person who has a craniofacial condition I have found growing up really difficult. This was particularly around making friends at school and dealing with situations where people were often responding very negatively towards me. At different points in my life I have had counselling which at the time I found helpful and I have continued to use many of the strategies that I learnt. Without having the counselling sessions I feel that I would have really struggled to be able to deal with difficult situations.

I thought that once I become an adult things would be easier and I would be able to find work but I have found that it is not as easy as I hoped it would be. As a result, I have needed more counselling. I have found that it is really hard to find people who understand what it is like to find it difficult to get into work because you look different and how it makes you feel.

I feel very privileged to be asked to be a young trustee for Hannah’s fund and I hope that I can bring my experience as a young person with a craniofacial condition and my past experiences of receiving counselling for a range of different issues to the role. I know that I have a lot to learn but I am very excited about the opportunity.

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