Hi my name is Ruth Curtis and I am Charlies nanna. The last 18 months have been a very strange mixture of emotions. We went from feelings of excitement and anticipation to desperation and overwhelming sadness.

I remember vividly going to to the scans with Carrie, and her not wanting to look at the screen until one of us had told her there was a strong heart beat visible. Each visit was a roller coaster, my own heart would beat so fast waiting to see the image on the screen and eyes frantically looking for that little flicker of Charlies heart. Once I had seen that little sign of life I would relax slightly and would start watching the sonographer take all the measurements, watching her face for signs of anything positive. I remember at one scan Charlie was grinding his gums together. The picture was so clear and you could see every movement. I sat there thinking how can he be such a poorly little baby when he is showing such signs of life and determination. Because the Drs had always told us that the outlook was very bleak I tried each time to not let my hopes rise but seeing that little baby put up such a fight made me think maybe he could do it.

Throughout the pregnancy Carrie was amazing. Although she was only 19 and this was her first child she showed maturity beyond her years. She was so brave and determined to give Charlie every chance she could. She researched the condition on her own and knew a lot more about the condition and the odds than any of us ever realised. Her motto throughout the pregnancy was 'while he has a strong heart beat and trying to beat the odds then she would try her hardest to give him every chance'. Watching Carrie deal with everything was inspirational and even now makes me get goosebumps with pride.