Rare Disease Day - 28th February 2015

Fay’s Story

Fay is 14 years old from Cambridgeshire, a self-assured and friendly teenager who loves to hang out with her friends.  Fay has been dancing since the age of four, competing in solo, with a partner and as part of a team; winning various medals and qualifications in national competitions.  What sets Fay apart from her peers and competitors is her Congenital Melanocytic Naevus, which takes the form of a bathing trunk covering 70% of her body.  Her CMN is clearly visible when wearing dance outfits.  Fay has always been very open about her condition and it definitely doesn’t prevent her doing what she loves.

Fay has very supportive and loving family and friends, commenting, “My family treat me just like my siblings.”  On the rare occasion that Fay has been subjected to unkind words, her close network of friends would step in to resolve the situation responding with “that’s so rude. It’s her birthmark now leave her alone.”

Fay was once asked by an adult if she would prefer to get changed in a toilet for her sports lesson.  Fay responded with No thank you I will get changed with everyone else.”  Fay says her network of family and friends have given her the support, strength and coping strategies to deal with situations she encounters.

Fay has never been asked directly about her visible difference but has been subjected to people staring at her skin.  Fay states she would rather people just ask (!), demonstrating her inner strength.  Fay says, “Don’t be scared to ask!  Asking is so much better than staring, pointing and whispering.  It’s not just a birthmark; it can have fatal complications. It’s a rare condition and if you ask you learn”.

In recent years, Fay was nominated and won the ‘Child of Courage’ award from the Cambridge Evening News.  She is actively involved with Caring Matters Now, organising and running fundraising events with her friends.  Each year, Fay attends the Caring Matters Now support events, including the CMN Activity Weekend which she thoroughly enjoys.  The charity has been of great support to both Fay and her family.  Fay’s advice to other people with CMN is “If you have CMN, you should go along to the Caring Matters Now support events.  You make good friends who you can talk to, and help you grow in confidence.”

Fay is thrilled to have been selected to participate in the “HOW DO YOU C ME NOW?“ exhibition series.  Fay states, “I did feel nervous at first as I didn’t really know what to expect, but once I saw the photographs taken of me, it has made me feel really excited about the exhibition and helped me to feel more confident.”  Fay also comments, “Seeing the exhibition come together will be great, as it will help raise awareness which is really positive.   It will help people see those that look different in a new way, a more positive way than they would normally see them.”

Fay concludes, “There are not many teenagers that can say they have been photographed by a world-renowned photographer and feature in a big London exhibition!”

To find out more about the ‘HOW DO YOU C ME NOW?’ exhibition series, please click here.

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