Our Warrior Princess
Written by Eve’s mum – Sabrina
After a perfectly normal pregnancy, Eve was born on the 8th August 2018 with a very rare skin condition called Congenital Melanocytic Naevi (CMN). This is a gene mutation that caused more than half her body to be covered in moles/birthmarks. An MRI at 6 days old showed that this abnormal skin was also on her brain and spine (Neurocutaneous Melanocytosis NCM) and we were told it may or may not affect her development. We were in shock. We took her home and looked after her as best we could, she is a very good baby.
At 10 weeks she developed epilepsy and was found to have hydrocephalus so was rushed to Temple Street Hospital for surgery to insert a shunt. Eve recovered well and we took her home and managed the epilepsy as best we could. At 3 months, in November 2018, Eve’s specialist informed us that her condition was far more serious than we thought. She told us the abnormal skin on her brain and spine would likely be cancerous and would be very difficult to treat. There was a tiny outside chance that it would be benign, so we clung onto that hope.
After further surgery in Temple Street in February this year to get a biopsy from her spine and 7 agonising weeks of waiting we finally had our result, Eve has cancer. We were devastated. Eve’s specialist recommended she start on an oral chemo drug to slow down progression, it is not a cure, there is no cure. We started on that in June, which we administer at home. It is not without its side effects, but we manage it all as best we can and take things day to day.
We don’t know how much time we have with Eve. It’s hard for the doctors to even tell us that because of the rarity of her condition but we are trying our best to enjoy her as much as we can and we treasure every day we have with her. Eve is the sweetest, most loving and affectionate baby you will ever meet.
We are trying our best to keep things as normal as possible for as long as possible for Eve’s big sister Ayryn who absolutely adores her much longed for little sister.
Sometimes we think back to everything that has happened and wonder how we got through it. I now strongly believe there is a strength inside each and every one of us that you know nothing about until you are pushed to the point of breaking. I admire everyone that goes through their own battles and continue to get up every day and fight back. The future is unknown and very scary for us right now but through all this we feel it is so important to raise awareness about Eve’s condition.
Since Eve was born we have been supported by Caring Matters Now. The charity staff and trustees speak with us regularly to offer support and cover our expenses for Eve’s treatment. They have been invaluable to us.
In January this year we travelled with Eve to Great Ormond Street Children’s Hospital in London to meet a world leading specialist in CMN, Dr. Veronica Kinsler. Dr. Kinsler is leading crucially important research into the cure for this condition and Caring Matters Now funds much of this research. While there we asked for Eve to be part of the research and so she will be. Robbie and I never want anyone to ever go through what Eve is going through. No parents should ever be sat down and given the news that we were, so we hope the cure comes sooner rather than later.
Earlier this month, Caring Matters Now very kindly offered to help us go on a family holiday, so we could make some wonderful memories together. We find it so hard to plan anything since Eve was born because her condition can change so quickly. So, during the summer we booked a Centre Parcs family holiday. We were so hesitant to get excited about it right up to the last minute in case something happened to Eve and we had to cancel it! But we got there thankfully, and we had the best time together! It was exactly what we needed – the kids had a great time and so did the adults! Just seeing Eve’s little face smiling when she experienced new things meant everything to us. Lots of memories made to treasure forever. A huge thank you to Caring Matters Now for making it possible. We are so grateful for the support the charity has given us.