My beautiful daughter Eirinn was born with a bathing trunk nevus that covered most of her back. Only a handful of satellites were present initially, and over the years more appeared over her arms, legs and face. After an MRI ruled out any neurological complications, we were content that thankfully the CMN was cosmetic only, with the slight increased risk of skin cancer. And with such a beautiful face and a smile that could light up any room, I can honestly say, her ‘beauty spots’ did not give us any cause for concern or upset. Being introduced to Dr Kinslar and subsequently Jodi and the team at Caring Matters Now, was a great source of comfort and knowledge…knowing Eirinn was not alone and having sound medical advice and a support network if it was needed.
We attended CMN gatherings in Ireland and I remember being taken aback by parents who were really upset by their child’s CMN and seemed to be living in the hope of finding the ‘cure’. If there were no deposits of melanin on the spinal cord or brain, then I just didnt see a reason to be devastated. We’re all born different and I was thankful to God for having this view on things and appreciated the struggle other families may have, especially as the children enter adolescence and become body conscious.
This view was all firmly cemented on the 21st August 2014. Eirinn was on her way to her grandmothers house when the car she had been travelling in had a head on collison with a bread lorry. She was resuscitated at the scene and her father and I were told to prepare ourselves that she might not survive. After being transferred to the Royal Victoria Hospital Belfast, she had surgery to insert halo traction and was put into an induced coma. Eirinn had fractured her neck at c5/6 and had multiple internal injuries including a fractured pancreas. After a long week in intensive care, she was stable enough to be transferred to the ward. Thankfully her amazing body healed the internal injuries one by one…a medical miracle… but the damage to her spinal cord could not be repaired and Eirinn now uses a wheelchair to get around. The 7 years since her accident have been turbulent to say the least. But she has never failed to amaze me and seems to take everything in her stride. She has continued to show improvements and faces challenges to every daily task, but does so with that radiant smile. She even comforts me when I struggle!
Her CMN has thankfully never given her any issues. We lather up the sunscreen in summer months and her friends and other children barely notice it. If they are inquisitive, its a simple question about her spots, and Eirinn just explains she was born with them. Most responses are that they’re ‘cool’! Or ‘I thought they were brown chickenpox’! Thankfully the age of social media has changed opinions on ‘being different’ and top designers now seek out models who stand out and have that something extra. Eirinn herself thinks her spots make her unique and shes proud of that! She is an inspiration to us all and I couldn’t be prouder to have her as my daughter. We’re looking forward to attending the 25th anniversary celebrations of CMN and I will continue to support the amazing work of the CMN team. In the meantime, my advice to other families with CMN children, is to be thankful for these amazing kids…as I say to Eirinn, if God made us all the same, life would be very boring indeed!
Rachel and Eirinn x
