Indie rock bands support escape to help Burscough teenager with rare neurological condition
by Henry James (April 2022)
A Burscough teenager has received an outpouring of support online from indie rock bands after charity Make-A-Wish UK appealed for help to grant his wish for a ‘party independent rock.
Alfie Lund, 14, who was one of the first children in the UK to be diagnosed with a rare neurological condition known as MECP2 duplication syndrome, is one of 54 children in the North West of England who are living with a critical condition and are waiting for their wish to come true.
“Alfie’s birthday is in January but, as his condition makes him very susceptible to lung infections in the winter, he has never had a proper birthday party,” said Rachel, Alfie’s mum. “Throwing a big party with indie rock music, surrounded by people he loves, would mean the world to Alfie and make up for all the birthday parties he’s missed.”
Alfie missed out on much of the joy of childhood, having been diagnosed with MECP2 duplication syndrome at the age of four. At the time, he was only the seventh child in the UK to be diagnosed with the disease, which would now affect fewer than 40 children across the country.
Rachel said: ‘It’s a rare, genetic and progressive neurological disease. It affects him in every way. He can’t walk or talk, he has multiple complex seizures, and he’s been hospitalized more times than I can remember. Music is one of the most important things in Alfie’s life – he’s a real indie rocker and loves bands like Arctic Monkeys and Oasis. It makes him move and get excited.
Alfie was first referred to Make-A-Wish UK in February 2020, but the Covid-19 pandemic has caused the wish-granting charity to drop by 40% with hundreds of wishes deferred indefinitely. The charity is now hoping to grant Alfie’s wish as soon as possible and this week issued an appeal to indie rock bands to play at the party.
Stephanie Witt, Head of Revenue and Engagement at Make-A-Wish UK, said: “We have been incredibly moved by the support from musicians, bands and music lovers since we shared Alfie’s wish in line. Our initial tweet has been viewed over 74,000 times, with offers from Matilda Shakes, Skylights, The Kairos and more to help make Alfie’s wish come true.
“However, Alfie is just one of 54 children in the North West who are currently waiting for their wish. With each wish costing around £2,500, we urgently need to raise £135,000 to grant wishes in the North-West alone. West Seriously ill children and their families have waited long enough.
Alfie’s family are now appealing for public support for Make-A-Wish UK, encouraging anyone who is able to donate to the charity at www.make-a-wish.org.uk/north-west . With a further 449 wishes pending across the rest of the UK, Make-A-Wish UK hopes to raise a total of £1.25 million by World Wish Day on April 29.
“His wish will be an amazing experience, which he truly deserves after everything he’s been through,” Rachel said. “Every time I fight I look at Alfie and think – ‘well, if he can go on and smile, then so can I.’
To donate to Make-A-Wish UK and help grant a wish for children like Alfie, in the North West and beyond, please visit www.make-a-wish.org.uk/north-west from today.