Our Warrior Princess
Written by Eve’s mum – Sabrina
After a perfectly normal pregnancy, our second daughter Eve was born on the 8th August 2018 with a very rare skin condition called Congenital Melanocytic Naevi (CMN). This condition is caused by a gene mutation resulting in more than half of Eve’s body being covered in dark brown birthmarks. An MRI at 6 days old showed that this abnormal skin was also on the lining of her brain and spine, and we were told it may or may not affect her development. We were in shock. We took Eve home and looked after her as best we could, she was a very good baby.
At 10 weeks old Eve developed epilepsy and was found to have hydrocephalus so was rushed to Temple Street Hospital in Dublin for emergency surgery to insert a shunt. Eve recovered well and we took her home and began trying to manage the epilepsy as best we could.
At 3 months old, in November 2018, Eve’s specialist informed us that her condition was far more serious than we thought. The abnormal skin on her brain and spine would likely be cancerous and if so, 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 February 2019, a biopsy was taken from her spine and after 7 agonising weeks of waiting we finally had our result, Eve has cancer. We were devastated. Eve’s specialist recommended she started an oral chemo drug to slow down progression, it is not a cure, there is no cure. We administer the oral chemo drug at home every morning. It is not without its side effects, but we manage it all as best we can and take things day to day.
Fast forward over 3 years and 3 more neurosurgeries to fix problems with her shunt and Eve is now a very active, very funny and fun-loving 4-year-old girl. She remains on chemotherapy every day and has exceeded the expectations of any doctor she has ever met. We were told when starting treatment that Eve would not have any more MRI’s because her prognosis was so poor, but now she has one every 6 months and so far, thankfully, there has been no changes. Scans are an incredibly anxious time for our family as we wait for results, wondering will this be the time when they give us bad news.
Throughout it all, we have tried our best to keep things as normal as possible for Eve’s big sister Ayryn who absolutely adores her much longed for little sister.
Eve has now reached milestones that we never thought she would. We were advised that Eve would likely never walk, yet Eve now runs and climbs on anything she can! Eve has just begun her second year of pre-school and absolutely loves it. Her first day was a very emotional one for us! Her speech development is very delayed, but she is always making progress at her own pace and still finds ways to make people laugh. She remains the most affectionate, friendly and loving little girl you could ever meet, and we couldn’t be prouder to be her parents!
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 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.
We don’t know how much time we have with Eve. It’s hard for the doctors to tell us because of the rarity of her condition, but we are trying our best to enjoy Eve as much as we can, and we treasure every day we have with her.
Although Eve is doing well it is still expected that her treatment will eventually stop working. Living with this unknown is something we have had to get used to since Eve’s diagnosis, there are good and bad days. We do our best to stay positive and allow ourselves to think about the future whatever that might look like. Eve is due to become a big sister in early 2023 and we are so looking forward to seeing her take on her new role.
Since Eve was born, we have been supported by Caring Matters Now. The charity staff and trustees speak with us regularly to offer support. The charity funds our expenses for Eve’s treatment. The charity has been invaluable to us!
In January 2019 we travelled with Eve to Great Ormond Street Children’s Hospital in London to meet a world leading specialist in CMN, Professor Veronica Kinsler. Professor Kinsler is leading crucially important research to find the cure for CMN and Caring Matters Now funds much of this research. Eve is helping to find the cure by participating in the research study. 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 or live with the uncertainty that we do so we hope the cure comes sooner rather than later.
In September 2019 Caring Matters Now very kindly helped us to go on a family holiday so we could make some wonderful memories together. It can be so hard to plan anything since Eve was born because her condition can change so quickly. 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.