Our beautiful girl, Connie, was born in January 2025, after a very difficult pregnancy. She was sick from birth and spent her entire life in the hospital. At two weeks old, we were told she had ‘mitochondrial disease’. Sadly, she died at 4 weeks and 4 days old after developing sepsis and suffering a neonatal collapse. Following Connie’s death, genetic testing and muscle biopsy results confirmed that she had ‘Leigh Syndrome’.

Connie was more to us, than a baby with a rare condition. She was our tiny, big blue-eyed girl. She had an amazing personality and captured the hearts of many, with her cuteness and love of cuddles. She was always at her most alert, whenever her big sister Phoebe was around. She made our hearts full of endless love.

We were devastated to learn that Connie’s condition was life limiting, with most children passing away by age 3. No parent wants to hear those words, then be expected to carry on as normal, at your child’s bedside with no support or direction. Despite having an amazing support network, it is still a very lonely journey. Our own research led us to ‘The Lily Foundation’. The support group helped us to understand the extent of the condition, but most importantly, we weren’t alone.