Rare Disease Day - 28th February 2015

Ethan’s Story

Ethan's Story

On the 25th June 2012, our son Ethan was born and it was one of the happiest days our lives.  Ethan was born with what only could be described as a birthmark/mole, which covered about 35% of his body, including the side of his face, his neck and shoulders.

When Ethan was born at York Hospital, the midwives and doctors had not seen anything like Ethan’s condition before and we were referred to a dermatologist, Professor Newton-Bishop in Leeds. We were then referred to Dr Veronica Kinsler at Great Ormand Street Hospital in London and it was then that Ethan was diagnosed with Congential Melanocytic Naevi (CMN).  It was a great relief to be finally given some answers as to why our son was born with such an unusual skin condition.

Ethan was also under the care of Dr Thopte, a pediatrician at York hospital. Dr Thopte checked on Ethan’s development regularly to make sure he was doing everything he was supposed to be.  Ethan has now been discharged from York hospital as Dr Thopte has no concerns and is happy with Ethan’s progress.

On Ethan’s 1st birthday, we took him for an MRI scan to check his brain and spinal cord for abnormalities, which can cause neurological problems. Thankfully Ethan’s results came back all clear and both my partner Tom and I were over the moon.  Yet we feel sad that some families do not get the same results as Ethan.  It was after Ethan’s MRI scan that Dr Veronica Kinsler told us about this amazing charity called “CARING MATTERS NOW” which helps families who are affected by the same condition as Ethan’s. Last year, we attended our first Caring Matters Now support day in Liverpool.  We were, at first nervous to attend the support day, however we enjoyed it thoroughly and the day gave us so much more confidence. The support day allowed us to discuss our worries and concerns and as a result, left the feeling of isolation behind us.

Inspired by the support day, in 2014 we then decided to raise money for Caring Matters Now by holding various fundraising events such as a Golf Charity Event and 3 Yorkshire Peaks Challenge. Close friends and family also wanted to get involved, which included one of our friends doing a Sponsored Dance Competition and two other friends competing in a charity 10K run.  As a result of holding the fundraising events, we have been able to spread more awareness about CMN, and more people have wanted to support Caring Matters Now.  The support we have received has been so overwhelming.

Ethan is now 2 years old and he’s such a confident, handsome and happy little boy who loves to be outdoors and play golf with his daddy. Ethan now attends nursery and has made lots of friends.  As parents we are so proud of Ethan. Our special boy.

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