Charity set up in memory of St Ives toddler who died from mystery condition
- Credit: Archant
A NEW charity has been set up in memory of a 19-month-old boy who died from a mystery condition.
St Ives couple Chris and Emma Dowers have founded the Baby James’ Starlight Trust in honour of their son, James.
The toddler was just 10 weeks old when he was struck down by an illness. Despite countless tests and hospital visits the problem was never diagnosed.
After a brave battle, which saw the youngster beat the odds time and time again, he died in his parents’ arms at home in Dunnock Way in September last year.
The Dowers were told one possible reason for his deterioration was Mitochondrial disease, a disorder affecting the body’s cells.
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Mrs Dowers, 28, a waitress at The Welcome Chinese restaurant in St Ives, said: “After his funeral, I didn’t know what to do because I couldn’t think of a future without my son.
“The vicar who took the service gave me a book and it told of how other people cope. It mentioned some parents set up charities in their child’s name to keep their memory alive. I thought it would be great if we could do something like that for our son.”
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With help from family and friends, they raised the £5,000 necessary to set up a charity and last Tuesday (April 9), the Baby James’ Starlight Trust was granted official charity status.
Mrs Dowers said its aim was to support children suffering from Mitochondrial disease, or other undiagnosed conditions, and their families and to raise awareness.
“We met lots of parents in Great Ormond Street and they all had kids suffering from serious conditions but they all had a name,” she added.
“James went through lots of investigations. They took skin and muscle for tests but they could never figure out what it was.
“I was very stressed and angry. He was under so many hospitals’ care and everyone was telling us different things.
“They would ask me ‘Do you have any questions’ and I would say ‘Yes, only one. What is wrong with my son and can you cure him?’ They said ‘I am sorry, I cannot answer that’.”
There is currently no cure for Mitochondrial disease, which is particularly difficult to diagnose as it affects individuals in different ways.
Mrs Dowers said she hoped James’ trust would raise enough to be able to fund research into the condition.
For more information on the trust, search for Baby James’ Starlight Trust on Facebook.
THE Baby James’ Starlight Trust will be one of the good causes to benefit from the St Neots Bump, Baby and Children’s Show next week.
One of the organisers, Asli Tamer Vestlund, is a trustee of the charity and proceeds from a raffle will be donated to the cause, as well as Priory Park Playgroup.
The show is aimed at mums-to-be and families with children aged five and under. As well as a whole host of products for sale, such as clothing and toys, there will also be advice and information stands and ideas for days out.
The show, organised by Be On Cloud Nine Events, is at the Priory Centre, St Neots, from 11am to 3pm on Saturday, April 27. Entry is free and the first 100 visitors are promised goodie bags on arrival.