We gave charity a £2,000 lift for Louis
THE parents of a boy from Burscough with a life-limiting condition have raised more than £2,000 for charity.
The two-day fundraiser, last Thursday and Friday, consisted of a camping trip and a sponsored scavenger hunt held at Gibraltar Farm in Silverdale.
The fundraiser came after Laura Barnes, 35, and Phil Wright, 40, discovered late last year that their five-year-old son, Louis Wright, suffers from Duchenne muscular dystrophy.
The ‘Lifting Louis’ event was attended by 75 people and Laura was amazed at the amount of money that was raised.
The mum-of-two, a holiday consultant at Virgin Holidays, said: “Our target was £500, so to raise more than £2,000 was absolutely outstanding. Thank you so much to everyone who has taken part.”
Jenna and Amy Mackintosh, childminders who run Into The Ark childcare and forest school in Burscough, organised the event and said: “We are truly overwhelmed how everyone came together.”
The illness Louis has is a progressive muscle-wasting disease, commonly found in boys and usually is diagnosed around the age of five.
According to DuchenneUK, the charity that Lifting Louis is donating all money raised to, there are around 2,500 people with the illness in the UK, and an estimated 300,000 worldwide.
DuchenneUK works towards clinical research on the illness.
Laura recently travelled to the US with the CEO of Duchenne UK, Alex Johnson, to look at clinical research; she is hoping to start Louis on a clinical trial later this year. She said: “DuchenneUK is set up by two amazing mums who have sons with the condition and have been a rock to me and Phil since the day of diagnosis.
“We are truly blessed to have them in our lives.”
Children can develop the illness in some cases if their mother is a carrier of the gene, but Laura has confirmed she is not and her other son, Jenson Wright, three, has tested negative for the illness.
Louis attends St John’s Primary School and Laura said: “He is such a lovely laid-back little boy and it breaks our hearts that he will soon be confined to a wheelchair, before eventually losing all use of his body.
“The life expectancy of people with this illness is from early teenage years until around 30 years of age.”
She is already planning further fundraising events.
She and Phil, who are due to get married in August, are continuing to come to terms with the illness and are constantly learning more each day.
Laura said: “Our hearts have been broken with the diagnosis, it is any parent’s worst nightmare.
“We decided that we could sit around and cry, or we can fight. We are going to fight for him with every bone in our bodies.”