A family which has already lost two children to a rare life-limiting disease needs help to make their 17-year-old son’s final wishes come true.
Kieran Preston suffers from neurometabolic mitochondrial disease and has been under palliative care for the past 18 months.
He has no language and has never walked, requiring round-the-clock care.
Medical staff have advised Kieran’s parents Paul and Rachel Preston, of Heber Walk in Northwich, that trips should be taken sooner rather than later, before he becomes too weak.
Paul explained: “The palliative consultant feels Kieran is now in nutritional metabolic failure, meaning no matter how many bolus or tube-feeds Kieran has, he will neither gain weight nor benefit nutritionally, which will deteriorate his health and quality of life.”
The Prestons would love to take Kieran to Disneyland Paris or Universal Orlando if he is cleared to fly because he loves films, especially the Harry Potter series.
More than £5,000 of the £10,000 target has been raised so far through a GoFundMe appeal called ‘Kieran’s Wishes & Final Journey’ – including one anonymous donation of £3,790.
Paul and Rachel lost daughter Kristen to the disease when she was just eight weeks old in 1992, and Stacey passed away in July last year, aged 20.
Paul said that because Stacey’s end of life care was only discussed when her passing was imminent, they did not have the opportunity to realise her final wishes, so any holiday they take will be in memorial to her too.
“This trip, depending which option is the most suitable, would be a joint last wish and family memorial trip, very hard and emotional,” he said.
The Prestons founded charity The Children’s Mitochrondrial Disease Network in 1998 to support other families, raise awareness and campaign for improved treatment.
Paul said: “We are proud of our work, our efforts, our children, the medical professionals – both clinical and scientific – and the many, many families we have had the opportunity to share stories and journeys with.”
Any funds left over from the appeal will go towards The Children’s Mitochondrial Disease Network.
Family friend Angie Morrey, has organised a ten-pin bowling fundraiser at Lakeside Superbowl in Crewe on Saturday, February 27, to help reach the target. If you would like to attend or donate a prize for the raffle, call Hermann Ghort on 07511 421928.
To donate to ‘Kieran’s Wishes &Final Journey’, click here.
