Our baby Maisie was a fighter. When she was just two weeks old she had open heart surgery and sepsis - but she battled through and soon we had her home again. 

A few weeks later we found she was profoundly deaf. 

We hoped that was all the worst of it, but unfortunately, a few weeks later we found she had severe hypertrophic cardiomyopathy, and a potential metabolic disorder, which would mean she may not make her first birthday. 

We were devastated, but decided to give her the very best life we could, making the most of the time we did have with her. We had five beautiful months with her, mainly at home, making beautiful memories with family and friends. 

But then she started to become ill with infections, and was in and out of hospital. One day, during a routine appointment, she suddenly became very unwell and went into cardiac arrest. The doctors did their very best to try to save her, but it wasn't to be. Our darling daughter died in our arms. 

Mitochondrial disease is a horrible life limiting illness with no known cure. It takes everyone by surprise, often hiding, and is sometimes not found until after death. Research is only just beginning, so there really is the potential there to find a cure. We would be so grateful if Maisie's life wasn't in vain, and we could raise money for the Lily Foundation in her honour. We really hope that one day, beautiful babies like Maisie are given the lives they deserve. We will spend the rest of our lives wondering what could have been and who she would have become. But we are also so so grateful for the 6 months she gave and fought for us. We have adored being her parents, and are so so proud of her and her brother. 

She will live on in us forever and ever, and our love for her will never fade. 

Hannah, Ben and Lowen xxx