DCSIMG

Fundraiser to honour Lauren

Action: Family and friends stepping out at the Royal Preston Hospital with Andy and Louise Benney in Lauren T-shirts

Action: Family and friends stepping out at the Royal Preston Hospital with Andy and Louise Benney in Lauren T-shirts

The festive period is all about looking after loved ones – but it carries extra special memories for one Lancashire family.

Four years ago, Lauren Benney had a Christmas to remember when she starred on daytime television programme This Morning.

She appeared on TV because she suffered from the rare condition PDH deficiency, one of the most common neurodegenerative disorders associated with abnormal mitochondrialmetabolism.

It means that the sufferer cannot process carbohydrates to make energy.

Doctors only expected her to live until she was four – but brave Lauren beat all the odds. She passed away nine months ago, aged nine.

Now, mum Louise, dad Andy and family and friends, from Chorley, are set to hand over a huge gift in her memory – a donation to try to help another sufferer from the UK get new treatment to help prolong their life.

Louise said: “We have completed a 36 mile walk from the Royal Preston Hospital where she was a frequent visitor and then to Alder Hey Hospital in Liverpool.

“There were 18 people who took part and 17 of them finished the whole course over two days.

“We have managed to raise 3,500 dollars so far but want to get up to 10,000 dollars which is our target.

“So far another group have raised $2,500 and with our $4,500 which means that we are missing another $2,000.

“Through social media we have been in touch with the approximately 30 other families around the world who also have a child with the condition and last month we met a doctor in Florida who is carrying out the research.

“Little is known about PDH deficiency, there is no cure and sadly the prognosis for sufferers isn’t good. The money we have raised will help to fund the studies into PDH Deficiency and will continue to do events in the New Year to get as much money as we can.” An event has also been lined up for a fundraiser at the Hop Pocket pub in Chorley at 8pm on January 26.

 

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