Charlie is our gorgeous 4 year old Son, born with Mitochondrial disease. This causes him failure within his organs due to the mitochondria that power his cells in every part of his body being unable to function effectively. This has left Charlie unable to communicate verbally. He has very limited understanding of his world due to poor cognition and severe Global Developmental Delay. He is visually impaired with Nystagmus in both eyes which is an involuntary movement disorder, and also suffers with Severe Ataxia meaning he cannot balance enough to walk unaided.

The process of a diagnosis has been a long and tough journey with specialists learning along the way as we have. The variation that Charlie has, which is linked to his genetics has never been seen before on anyone in the world so we have been told his future prognosis is uncertain. The disease is progressive and currently there is NO CURE, however, Charlie continues to smile and inspire everybody that he meets with his determination to keep up with his brothers and sister who adore him dearly as do all of his family and friends.

On even the toughest days Charlie has a smile that will light up any room.

Please help Charlie; Funds raised for The Lily Foundation will be spent by the Dr’s that are researching and desperately trying to find a cure. Mitochondrial disease is Life limiting, there is currently no cure and very sadly, more children die from it than all childhood Cancers combined!!  

Thankfully Charlie is unaware of his condition, he lives his life in his lovely Charlies world where he never has a care. He rarely fusses, whinges or cries as he doesn’t know what it is to want something or not have something! Who knows when Charlies condition will deteriorate, in the meantime, whilst he is smiling, we will smile back and give him as much love and joy as he gives us