‘Our happy place’: family of boy with dementia keep up Glastonbury streak | Glastonbury 2022

Glastonbury veterans often liken their journey to the festival to a semi-religious experience. But for one family the pilgrimage is particularly special.

Harley Bond, nine, was diagnosed six years ago with a rare type of childhood dementia that gradually limits his ability to walk, talk and eat. He has a life expectancy of just 14 years.

Harley has not missed a Glastonbury festival since he was born, attending his first when he was nine months old. On Wednesday, he joined tens of thousands of campers entering Worthy Farm for the first time in three years, with his 18-month-old brother, Arlo, and his parents.

“This is all about making special memories,” said Harley’s father, Wayne Bond, while Glastofying his partner, Emma Siddall’s hair. “It’s our happy place and it’s Harley’s happy place. He’s always loved it from the first time he went.”

Harley’s condition is known as Sanfilippo syndrome, a genetic disorder affecting the central nervous system and 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. His family make the 240-mile round trip to Great Ormond Street hospital from their home in Sheffield every week.

Bond, 50, said Harley was given 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’s going to be his last,” he said. “He just loves it. We thought the last one might have been his last but he’s sort of plateaued and is in the same sort of space he was at the last festival, which is good for us.”

Bond and Siddall are both Glastonbury veterans, having attended almost every one since the late 90s. They even drive down for family holidays during fallow years and on one recent trip met the festival’s founder, Michael Eavis.

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

Harley’s condition will not stop him from enjoying the week’s revelry: “We took him right down to the front last time for [Sheffield group] Bring Me the Horizon and a Japanese thrash metal band. He absolutely loves it. He was right at the front on my shoulders for that.”

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