We gave char­ity a £2,000 lift for Louis

Ormskirk Advertiser - - Front Page - CHANTELLE HEEDS chantelle.heeds@trin­i­tymir­ror.com @chantelle­heeds

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.”

Laura and Phil with Louis, left, and Jen­son

Louis Wright, his cousin Thomas and friend Brody be­fore the scav­enger hunt

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