‘Our happy place’: Family of boy with dementia continue Glastonbury streak | Glastonbury 2022

Glastonbury veterans often equate their trip to the festival with a semi-religious experience. But for a family, the pilgrimage is particularly special.

Nine-year-old Harley Bond was diagnosed six years ago with a rare type of childhood dementia that gradually limits his ability to walk, talk and eat. It has a life expectancy of only 14 years.

Harley hasn’t missed a Glastonbury Festival since birth, attending her first when she was nine months old. On Wednesday, he joined tens of thousands of campers entering Worthy Farm for the first time in three years, along with his 18-month-old brother Arlo and his parents.

“It’s about creating special memories,” Harley’s dad, Wayne Bond, said while glastifying his partner, Emma Siddall’s hair. “It’s our happy place and it’s Harley’s happy place. He’s always liked it since the first time he went there.

Harley’s condition is known as Sanfilippo Syndrome, a genetic disease affecting the central nervous system for which there is no cure. He is enrolled in a groundbreaking trial that involves an infusion of brain fluids through an implant in his skull. Her family makes the 240-mile round trip to Great Ormond Street Hospital from their home in Sheffield every week.

Bond, 50, said Harley received the life-limiting diagnosis two weeks before Glastonbury in 2016 and they were determined to make the most of every festival. “You never know when it will be his last,” he said. “He loves it. We thought the last one might have been his last, but he’s kind of plateaued and is in the same kind of space he was at the last festival, which is good for us.

Both Bond and Siddall are Glastonbury veterans, having attended nearly all of them since the late 90s. They even drive on family holidays during the fallow years and on a recent trip they met the festival founder, Michael Eavis.

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The family said they were delighted to see Isle of Wight indie rockers Wet Leg, whose debut album reached No. 1 on the charts in April, as well as Primal Scream, Crowded House and flagship show Paul McCartney.

Harley’s condition will not prevent her from enjoying the celebrations of the week: “We took him to the front last time to [Sheffield group] Bring Me the Horizon and a Japanese thrash metal band. He loves it. He was right in front on my shoulders for that.

This article was edited on June 22, 2022 to correct a reference to the Isle of Wight (not ‘White’).

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