On the 8th of August 2018, my precious niece and Godchild, Eve, was born into this world. Shortly afterwards I remember being told that poor little Eve had an extremely rare, skin condition called Congenital Melanocytic Naevi (CMN) causing more than 50% of her body to be covered in moles/birthmarks. An MRI scan at 6 days old showed there was abnormal skin on her brain and spine too (Neurocutaneous Melanocytosis NCM).
Eve then developed hydrocephalus and epilepsy at 10 weeks old as a result of this and required brain surgery to insert a shunt. At 3 months old Eve's parents, my sister Sabrina and brother in law Robbie, were dealt a further blow, doctors told them that the abnormal skin on Eve's brain was likely cancerous and would be very difficult to treat. More surgery to take a biopsy from her spine confirmed this to be true. Our whole family is devastated.
A few months ago, Sabrina very bravely spoke out about Eve, wanting to raise awareness and understanding about her condition, you can read her original post here: https://www.facebook.com/sabrina.vance.90/posts/2311826955599343?__tn__=K-R
. It received a huge response online so much so that Eve now has her own facebook page and has gained a great following: https://www.facebook.com/evethewarriorprincess/
getting the name "The Warrior Princess" from her incredible bravery and strength in the face of unimaginable adversity.
Eve started on oral chemotherapy in May which Sabrina & Robbie give her at home every morning. They have been told the best they can hope for is that it slows down progression, there is no cure for her cancer. Over the last couple of months Eve has needed 5 more surgeries due to shunt blockages and infections, all complications related to her condition, resulting in lots of time away from home, even recently spending her first birthday in Temple Street. Eve is the happiest and most lovable little girl and it breaks our hearts to see all this happen to her.
We have seen so much support from family, friends and even complete strangers. To date we have participated in a lot of fundraisers for different charities and organizations related to Eve's condition including www.caringmattersnow.co.uk
and the Temple Street Foundation. So many people have been in touch wanting to help out Sabrina and Robbie, who also have a 5 year old daughter Ayryn, so I feel it is the right time to set up this fund. They need help and have finally agreed to let me do it. Their whole lives and plans have been put on hold. I asked Sabrina to put into words how it has been effecting them and here it is:
"It is extremely hard to accept and admit, but after 12 months of the most incredibly difficult and most stressful time in our lives we accept that we need help. Our most recent long stay in Temple street in Dublin really hit home to us, how quickly and easily things can escalate with Eve and that is scary. No one can tell us how, or when Eve's condition will begin to go downhill, or how long we have together. Time has become our most valuable currency, and we want to spend as much of that time as we all have together, as happy and comfortable as possible.
Before Eve was born I worked as a full-time nurse but have had to take an unpaid carer's break to stay at home and look after Eve. This break only lasts a certain amount of time and I am afraid to even ask my employer what happens to my job after that. Robbie is a self-employed barber who has had to take numerous periods off work since Eve was born to help look after her. This puts pressure on Robbie's dad, who he works with, to keep their long running family business going by himself. Although his dad would never admit to the pressure, Robbie most certainly feels it.
The truth is, we have a cottage bought that needs renovation, which has been lying idle since Eve was born. Last summer, Robbie and I were so excited for what the future held, welcoming our new baby into the world, Ayryn becoming a big sister and moving into our new house, we even had the engineer out to do the percolation test the day I was being induced with Eve , but everything has come to a standstill since that day. In the weeks leading up to Eve's birth we had gotten everything in place to secure the mortgage top-up needed and Robbie was intending to give his spare time there, to do as much of the work on it as he could himself, to keep costs down. We now no longer have the time, or due to the change in our work situation, access to the funds to finish it.
I would not be admitting to any of this only for the fact that the house we currently live in is completely unsuitable to have a sick baby living in. The walls are damp, there is very little insulation and no bath or shower. These problems always existed but they now seem amplified when caring for Eve's needs and trying to keep her well. We put up with it for a few years in order to save for a mortgage and buy our own forever home but now we feel completely stuck and an end to our current living situation is no longer in sight.
So many people have reached out to us to help so feel it is time to start accepting that help and have agreed to set up this fund. Robbie and I have always worked and always been fiercely independent but we now need to swallow our pride for the sake of Eve and Ayryn. Every cent will go towards Eve's care, paying bills and expenses and improving Eve's living conditions. Any contribution however small will be greatly appreciated by us.
Thank you from the bottom of our hearts,