Naiomi's Story
*Gentle content note: This post speaks about infant loss. Please take care of yourself and read only if it feels safe for you.
“At birth, doctors noticed Naiomi was having difficulty breathing. They initially suspected her windpipe wasn’t attached to her stomach. We were quickly moved from St John’s to the intensive care unit at the RHCYP, where Naiomi spent her precious, short life.
“After 24 days, our beautiful girl sadly passed away.
“During this time, we were blessed to hold her twice, to make little moulds of her hands and feet, and to create artwork, and take photos and videos of her. I will always treasure the hours we spent by her side, talking to her, holding her tiny hands and feet, watching her hiccup, and seeing her look up at us.
“While being treated, doctors believed Naiomi may have CHARGE syndrome – a rare genetic condition that affects multiple areas of the body. Two months after she passed, this diagnosis was confirmed.
“Naiomi was my whole world from the minute I saw her and held her hand."
- Victoria, Naiomi's mum
“Naiomi was our first child, and the first grandchild. Her passing has impacted our whole family enormously, but she remains a huge part of our everyday lives. We talk about her daily, we have her photos everywhere around us, and we visit her grave often.
“To honour her memory, I have chosen to take part in the Edinburgh Kiltwalk in September to raise funds for the children’s hospital. This hospital means a lot to me and my fiancé. Naiomi lived her life here, and I want to give back to everyone that helped her to fight and try to stay with us.
“Naiomi was – and always will be – so loved by me, her dad, and our whole family. Every moment with her was a joy, and she will forever be our little girl. I am so proud to walk in her memory, and I hope to raise funds that will help other families who find themselves in our position.” – Victoria, Naiomi’s mum