Scarlett was a gorgeous baby, just slightly delayed in her milestones. It was only when Scarlett started to take her first steps, I felt that she was too wobbly on her feet. So, we spoke our GP who then referred us to Alder Hey.&nbsp;This was the start of our long painful journey. During all the various investigations, Scarlett was always compliant, following every single piece of instruction given to her with no fuss. Each time we were given a diagnosis, we’d go away do a bit of research & then say, “no that’s not what Scarlett has”. So, then it was back to the drawing board. Scarlett was 7 years old when she was diagnosed with mitochondria complex 1 deficiency following a muscle biopsy. As the years went on, she became more and more tired and able to walk less. When Scarlett was 8 years old, it was suggested that we apply for a wheelchair. It arrived arrived during the summer of 2019 which Scarlett never fully accepted. Scarlett has a full disability allowance and a blue badge.Scarletts physical strength deteriorated massively when she reached 9 years old.. She became more and more tired, walking less, developed dystonia and ataxia symptons, muscle cramps. Her writing deteriorated and needed a scribe and laptop for school.<strong>On the 2nd</strong> <strong>January 2020, Scarlett was given new a diagnosis called Tyrosine Hydroxylase (with secondary mitochondrial deficiency), which has treatment (Careldopa). The new prescribed medication has significantly alleviated her physical difficulties.</strong>We as a family have come through a black tunnel and can now see some light. Scarletts devastating condition has not disappeared but helped hugely by her regular medication.During our darkest hours the Lily family was an incredible support for our family.To see the pain and suffering all the Lily warriors go through every day makes us as strong as ever to continue to support the Lily Foundation, help spread awareness about this crippling disease and help raise funds to find a cure.&nbsp;