TEEN Stacey Preston may look a picture of joy, but her smile masks a devastating condition that affects her life every day.
Stacey, of Heber Walk, Northwich, has spent most of her 13 years in and out of hospital battling the life- threatening disease mitochondrial cytopathy.
This is when the mitochondria – energy producing structures found in every cell of the body – don’t work properly, affecting the parts of the body that use large amounts of energy like the brain, heart and muscles.
Her nine-year-old brother Keiran also lives with the debilitating disease. Keiran and Stacey are both bed bound.
They are both incontinent and are fed through a tube in their stomachs.
Keiran is unable to speak, only sleeps when he is sedated and has been losing a lot of weight over the last year.
Parents Paul and Rachel are both full-time carers and under enormous strain. They live in an adapted house that is split into two to serve the needs of Stacey and Keiran.
Paul spends the majority of his time caring for Stacey, which involves a lot of lifting, while Rachel mostly looks after Keiran.
Paul said: “They aren’t able to turn off. Although they are very weak and poorly they can’t rest.
“We were struck a very cruel blow when we found out that Keiran had no language. It can be very distressing and hard to manage.”
Paul and Rachel are, themselves, both carriers of faulty mitochondria. They do not have any symptoms yet, and maybe never will, but many adult carriers do not develop problems until they reach 40. They are both 39.
Paul said: “It scares the life out of us. I don’t know how we’d cope if something happened to one of us.”
They are helped by their other two children, 20-year-old Kelly and Stephanie, 16.
“They are our little nurses,” said Paul. “Without them it would be much more difficult to cope. We are so grateful to them because it’s a bit like their lives have been put on hold.”
Stacey is in desperate need of a special paediatric wheelchair that would enable her to have a more comfortable experience outdoors, protect her and keep her safe. Made of aluminum, the chair would be firm but light and able to fold down.
In a bid to raise funds, former singer Will Butters is helping to organise a charity night at Weaverham’s Owley Wood Club.
The event is on Friday, March 14 and features popular North West band The Jalepenos, local act Keith Just Me and will include a raffle.
As well as raising money towards the £1,500 wheelchair, Paul also hopes that the charity night will raise awareness of the condition that impacts enormously on his family’s day-to-day lives.
