Remembering Connie
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. When she was 2 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’s 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, that we weren’t alone.
We are full of admiration for Connie and the entire mito community. We will continue to fundraise for this amazing and very much needed charity and will continue to hope that, one day, a cure will be found.
How to support Remembering Connie
Connie’s family would love you to support The Lily Foundation’s work. Whether it’s a one-off gift or a regular contribution, simply follow the link below to visit their JustGiving page and join the hundreds of others who have already made a difference.
Your donation will help fund groundbreaking research into mitochondrial disease, raise vital awareness and support hundreds of patients and families affected by this little-known but incurable condition.
Since 2007, The Lily Foundation have already raised over £11 million. With your help, we can continue to fight mito and find hope for everyone affected.
