A WIGAN ambulance driver is organising a fund-raising concert in memory of his daughter, who died aged just nine-years-old.
Lauren Benney died after suffering from a rare illness and now dad Andy, an emergency medical technician and mum Louise say they want to help other families living with a relative who has the same condition.
So they set up the Lauren Benney Research Fund in conjunction with the United Mitochondrial Disease Foundation.
Andy, 39, said: “Throughout Lauren’s life, she touched many people’s hearts and was an inspiration to everyone. Considering her health was fragile, she lived a full life.
“She adored her three siblings, noise, lights, going out and sunshine. She was our princess and there’s not a day that goes by where we don’t miss her.”
Each year, up to one in 2,000 children develop a mitochondrial disease by the age of 10. Most of whom will not survive beyond their teenage years. Lauren’s disease, Pyruvate Dehydrogenase Complex Deficiency, meant she was deficient in the enzyme needed to process carbohydrates. At the time of diagnosis Lauren was only expected to live until the age of four.
She died last March and her family, who live in Chorley, have already raised more than £3,500 via a sponsored 36-mile walk from Royal Preston Hospital to Alder Hey.
Now, they are inviting people to a charity concert at the Hop Pocket on Carr Lane in Chorley where Wigan band Kickback Live will be performing.
Andy said: “We knew right from the start that Lauren had some big challenges ahead as a scan had shown that she had massive brain damage. A termination had been offered to us, but we felt strongly that she deserved every possible chance of life.
“Lauren was a beautiful baby with thick blond hair and big blue eyes, and we immediately fell in love with her.”
At about three years of age, Lauren’s health deteriorated, and she ended up in Alder Hey hospital on a ventilator in ICU.
It was here that doctors decided to fit a tracheostomy to help with her breathing, and with input from family in America whose child had the same condition, Andy and Louise swapped her onto a low-carbohydrate diet. These two decisions, proved to be successful for Lauren. Andy added: “Lauren now went from strength to strength. She started school, began horse riding and became more alert and aware of her surroundings. Her birthdays were now, always a great cause for celebration and we tried to do something special every year.
“She won awards at school and even appeared on the This Morning programme. We gave her every opportunity, tried to let her experience everything and make as many memories as possible. She had outlived her prognosis and every year was now a bonus.”
Unfortunately, during the last year of her life, she started needing more oxygen and struggled to maintain her body temperature. Andy said: “We knew this was the beginning of the end. Lauren came out of hospital on Saturday, March 17 and died at home on Tuesday, March 20.
“She had fought the condition to the end and ultimately it won, but sadly, it was always going to.”
Tickets for the fund-raiser are priced at £7 for adults and children are free. There will also be silent auction and DJ.
To donate directly, go to www.umdf.org click on ‘Give Today’, ‘Donate to a Research Fund’ and locate The Lauren Benney Research Fund. For more information contact Georgina Lane on 0775 959 3990 or Hop Pocket on 01257 276611.