Charlie's Mighty Mito Journey
Donation protected
Meet Charlie!
At three years old Charlie was finally diagnosed with mitochondrial disease, a genetic condition. Charlie's DNA mutation is unique with no other known case found across the world.
The disease has a profound impact on every aspect of Charlie's life. He is visually impaired (Nystagmus), hearing impaired and for the past two years has been totally mute (having lost the capacity to talk he previously had).
He suffers from severe Ataxia meaning he is unable to walk unaided. This does not hamper his sense of adventure or intrigue though. When left unsupervised for only a matter of moments he will happily crawl or climb into mischief.
Another side effect of the disease is that Charlie suffers from digestive problems. He is currently being assessed and it is looking likely he will have to be tube fed in future, although we know this won’t stop him enjoying snack time with his brothers and sister when the biscuits come out!
We have set this fund up as Charlie and his family desperately need to adapt their home to create a safe and fun environment that is totally "Charlie proof". He currently shares a bedroom with his two older brothers who patiently tolerate his tendency to empty out every draw he can find, creating mess and chaos, and his bedtime antics which can often disrupt their sleep.
We intend to extend the family home so Charlie can have a room of his own. This would need to be specially adapted to ensure there is no furniture at all. Cupboards and storage would need to be built into the walls and all walls and flooring made padded and safe. We would love to add sensory toys to the room to make it a real sanctuary for Charlie to enjoy.
As the project progresses and we get a better understanding of what equipment and solutions are available we will update the page with a breakdown.
Check #charlies_mighty_mito_journey on Instagram or Facebook to follow the daily mischief Charlie gets up to and get a better understanding of the needs of the family and how funds raised will be spent.
Any support you can offer, either via financial donations or advice and guidance from anyone with similar experiences, would be truly appreciated as the family try to navigate their way through the wonderful world of Charlie.
At three years old Charlie was finally diagnosed with mitochondrial disease, a genetic condition. Charlie's DNA mutation is unique with no other known case found across the world.
The disease has a profound impact on every aspect of Charlie's life. He is visually impaired (Nystagmus), hearing impaired and for the past two years has been totally mute (having lost the capacity to talk he previously had).
He suffers from severe Ataxia meaning he is unable to walk unaided. This does not hamper his sense of adventure or intrigue though. When left unsupervised for only a matter of moments he will happily crawl or climb into mischief.
Another side effect of the disease is that Charlie suffers from digestive problems. He is currently being assessed and it is looking likely he will have to be tube fed in future, although we know this won’t stop him enjoying snack time with his brothers and sister when the biscuits come out!
We have set this fund up as Charlie and his family desperately need to adapt their home to create a safe and fun environment that is totally "Charlie proof". He currently shares a bedroom with his two older brothers who patiently tolerate his tendency to empty out every draw he can find, creating mess and chaos, and his bedtime antics which can often disrupt their sleep.
We intend to extend the family home so Charlie can have a room of his own. This would need to be specially adapted to ensure there is no furniture at all. Cupboards and storage would need to be built into the walls and all walls and flooring made padded and safe. We would love to add sensory toys to the room to make it a real sanctuary for Charlie to enjoy.
As the project progresses and we get a better understanding of what equipment and solutions are available we will update the page with a breakdown.
Check #charlies_mighty_mito_journey on Instagram or Facebook to follow the daily mischief Charlie gets up to and get a better understanding of the needs of the family and how funds raised will be spent.
Any support you can offer, either via financial donations or advice and guidance from anyone with similar experiences, would be truly appreciated as the family try to navigate their way through the wonderful world of Charlie.
Organizer and beneficiary
Charlotte Ware
Organizer
Rebecca Nicholls
Beneficiary
