2-year-old Hope travelled with her parents all the way from Australia to feature in the HOW DO YOU C ME NOW? exhibition series.  Here you can read Hope’s story, written by her incredible mum, Karyn. 

Four years ago, Matt and I were excited at the prospect of meeting our baby.  Not sure if we were having a boy or girl, we had decided on the name ‘Hope’ if we were to have a girl, as the same day I found out I was pregnant, my mother was diagnosed with Pancreatic Cancer.  I said to my mum that our pregnancy was going to give her Hope to pull through and on the 15th of March 2015 at 3.51am we met our bundle of joy!

As soon as Hope was born I noticed her birthmarks and asked the midwife if she was bruised?  The midwife responded straight away very calmly and said, “No, they are birthmarks”.  Hope was handed over and we embraced her without being concerned for her birthmarks as she was just beautiful.  From the get go, Hope was so easy; we were blessed, truly!

The day after her birth we met a local paediatrician who came to us with Hopes diagnosis; Congenital Melanocytic Naevus (CMN), which covers 70% of her scalp, some smaller marks on her back and a few around her limbs.  8 days after she was born we travelled to Brisbane to meet a Paediatric Dermatologist, which turned out I knew.  She looked over Hope and gave us a very informative run down on CMN.  While both Matt and I were nervous and worried, we both comforted each other in the fact that we were both on the same page moving forward on Hope’s health journey.

We were given opportunities to meet many specialists in the first year and the option of removal was one discussion that came up.  Matt and I both agreed immediately that removal was always going to be Hope’s choice as it was her body.  Unless surgery was medically required, we both believed that she was beautiful the way she was, and her uniqueness would be what makes her stand out, for the right reasons.

From the day Hope was born, friends and family were very supportive of our little family.  There was a short time where I felt nervous about what people may think of Hope.    One day I was out with my mum and we saw a beautiful little albino girl.  My mum said to me, “Why are you looking at the girl?” and I replied, “She is beautiful”.  Mum then said, “That is what people will see in Hope, her beauty”.  Mum was right!  Over the past four years there hasn’t been many moments that have concerned me when it comes to people and their comments.  Although Hope truly doesn’t understand her condition, she certainly knows she has spots and isn’t afraid to talk about them.

In January 2018 Matt, Hope and I travelled to the UK where we met Erin, who also has CMN.   When Erin walked in to meet us, she took off her jacket and immediately Hope (aged 2) noticed her spots and whipped off her pants and said confidently, “Look I have spots too”.

Another moment happened during her kindergarten introduction.  A bigger boy went over to where Hope was playing with her best friend Ella.  From a distance, I could see the boy was pointing to Hope’s arm, asking about her spots.  I waited until Hope and Ella made their way over to me and I asked what the boy said.  Hope replied and said, “He asked about my spots”.  I asked how she replied and she said, “‘Hi, I am Hope and this is Ella’ and then we just played”.  It gave me so much relief to know that Hope knows how to answer the kids if need be.

We also had a moment at her cousin Edie’s school last year during the Christmas Carols service. An 8-year-old boy was sitting near Hope and pointed at her legs, drawing attention to all his friends. The boy eventually asked about Hope’s spots and I calmly replied, “They are birthmarks”. The boy told his mates and then he turned to Hope and offered his candle for her to keep. It was very sweet.

We do occasionally get remarks from people asking if she has mosquito bites or even chicken pox and I reply with, “No, they are just birthmarks”.  It disappoints me when people say things poorly, as I really want Hope to embrace her uniqueness and feel confident in her skin.

I feel up to this point we have equipped Hope with the right tools to be confident; the opportunity for Hope to feature in the HOW DO YOU C ME NOW? exhibition is a part of equipping her to be confident.

Hope turns 4 during the launch of the “HOW DO YOU C ME NOW? exhibition and we couldn’t be more proud and excited that she will meet other people like her at the launch event.  We feel the exhibition will give Hope a sense that she is not alone, and in the future, she will be able to look back on her incredible portrait and see the beauty that we see every day.

To see Hope’s incredible portrait image, along with all the images featured in the ‘HOW DO YOU C ME NOW?’ exhibition series, visit the gallery@oxo, Oxo Tower Wharf from Thursday 14th March.  For opening times and more information, please click here.