Team Ruby
Ruby was born healthy but became very anaemic at 6 months and began having 3-weekly blood transfusions as her bone marrow wasn’t working fully. It took a further 6 months to be diagnosed with Pearson syndrome – a mass deletion of mitochondrial DNA.
Her mitochondria, the batteries that power her cells, are missing a large chunk of mtDNA. This leads to deterioration in the function of the body’s organs and, devastatingly, many sufferers don’t reach their first birthday. Thanks to blood donors she was able to thrive and by the time she was 3 she stopped needing the transfusions.
Pearson’s will affect Ruby’s liver, kidneys, pancreas, heart, eyes, ears and brain during her childhood. Sadly, these organs won’t improve like her bone marrow has.
We’re so very fortunate as apart from hardly growing and having adrenal insufficiency she’s doing remarkably well, beyond our hopes and dreams.
We continue to hope that her disease progression will be slow and kind to her. We’re ever grateful that we’ve met and gotten to know our beautiful little girl who is very loud and funny. She has a remarkable gift and can bring you so much euphoria by just being nearby. She is teaching us how to live and what’s really important.
How to support Team Ruby
Ruby’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.
