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After a perfectly normal pregnancy, our precious daughter 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 and we were told it may or may not effect 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 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, Eves 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 Feb 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 devestated.
They 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 about 6 weeks ago 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 dont know how much time we have with Eve, its 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 also 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 but 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. It is not genetic, there was no reason why it happened its just a freak thing that can happen during development in the womb. If it can happen to us it can happen to anyone.

Since Eve was born we have been supported by a charity called www.caringmattersnow.co.uk, a charity dedicated to people effected by CMN, based in the UK but also here in Ireland too, they have met us, speak with us regularly and cover some our expenses for all our travels up and down to Dublin. They have been invaluable to us. In January this year we travelled with Eve to Great Ormond Street Childrens 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 www.caringmatters.co.uk 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.

Our family and friends have been brilliant and are doing there best to fundraise. Any donation and support in any way is greatly appreciated. 

Thank you everyone, for your continued support and understanding,

Sabrina ❤❤❤

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