A Kingston brother and sister who featured in a viral TikTok moment which captured hearts around the world are preparing to climb Mount Snowdon to raise awareness for her rare brain disorder.
Finn Candy-Waters, 21, is taking on the Snowdon climb next June to honour his 16-year-old sister, Aggie, who lives with Hypomyelination with Atrophy of the Basal Ganglia and Cerebellum (H-ABC).
H-ABC is a degenerative condition so rare that fewer than 200 cases have ever been recorded worldwide, and Candy-Waters wants to ensure his sister can share in something special when they take on the challenge of Wales’ highest mountain.
He said: “I want her to know what it feels like to conquer something huge – to feel like she’s standing on top of the world, together.
“We’ve already summited Snowdon together in our own house.”
Last summer, Finn and Aggie were unexpectedly thrust into the public eye when a video of her meeting one of the King’s Guards outside Buckingham Palace went viral on TikTok.
The guards’ horses can be notoriously unpredictable and there are signs clearly stating ‘Beware, horses may kick or bite’.
In the video, however, the soldier appears to notice Aggie and briefly nods to her in acknowledgment, before making a huge exception.
Candy-Waters said: “I’d seen plenty of tourists getting a bit too close to those horses, and while Aggie’s spirit is made of steel, her body’s made of glass.
“I didn’t want to risk her getting hurt, so I kept our distance.
“It was a solemn act of compassion. The guard broke protocol, gently guiding his horse toward Aggie.
“We shared a moment that left everyone around, including us, completely in awe – like time had halted.”
Unbeknown to the family, someone in the crowd captured the encounter on video.
Within days, the clip amassed more than 209,000 views, spreading across social media feeds around the world and prompting messages of support.
At first, Candy-Waters had mixed feelings about the video’s sudden attention and while grateful the moment had been captured, he was was uneasy about it being shared without consent.
Wanting to reclaim the narrative, he posted a follow-up video on TikTok explaining who Aggie was and what the encounter had meant to their family.
Candy-Waters said: “I realised it wasn’t about us being online, it was about people feeling something real.
“It reminded me of Sonder, the awareness that everyone’s life is as vivid and complex as your own.
“It was proof that empathy still exists, even the little things. It’s all gold dust.”
H-ABC is a severe genetic disorder which affects the central nervous system and can cause a gradual loss of movement, balance and speech, often leading to immobility.
Symptoms of H-ABC typically emerge in early infancy or childhood. The severity can vary widely from person to person.
For some, the disease may bring a gradual loss of motor function, speech deterioration, and eventually immobility. Children who develop symptoms later in life often face an especially steep decline.
Aggie was diagnosed with H-ABC when she was just a child and the H-ABC Foundation‘s website recounts the family’s experience.
The family wrote: “Our world collapsed that morning.
“We have watched our spirited Agatha grow in humility, resilience, and humour while her body has gradually been packing up on her.”
Despite the prognosis, Aggie’s positivity continues to inspire those around her.
Candy-Waters said: “She’s the embodiment of sitting in a ray of sunshine.“
“Her smile’s infectious – it sparks hope in people.”
Because H-ABC’s symptoms can mimic conditions such as cerebral palsy, many children are misdiagnosed, delaying treatment.
Of the 52 known leukodystrophies, Aggie’s form is among the rarest.
Research at the Children’s Hospital of Philadelphia has shown promising progress towards gene therapy, but funding remains scarce.
Clinical trials alone are expected to cost around £4 million.
Candy-Waters set up a GoFundMe page to help his mother, Ali, make the family home more accessible for Aggie.
The fundraiser quickly surpassed its initial £30,000 target, raising almost £40,000.
Candy-Waters said: “Love carried on just as it always had – the same routines, the same daily battles.
“But something had shifted. The world suddenly knew Aggie’s name.”
The family’s story inspired others to take action as well.
Former soldier Darren Hardy completed a series of endurance challenges to raise money for the H-ABC Foundation UK, the charity set up by Ali and other parents to support families affected by Leukodystrophy which has already raised over £100,000.
One of Aggie’s school friends also ran a half-marathon in her name, and Candy-Water shared how the public response had been unexpected yet deeply appreciated.
He said: “For Aggie, I think it gave her a quiet power knowing she had reached so many people.
“It reminded me how many people genuinely care, even when they don’t know you.
“People who’ve never met us have gone out of their way to help.
“As far as good Samaritans go, we’ve been blessed by a whole wave of people looking to lift us up.”
Next year’s Snowdon challenge was inspired partly by Aggie’s love of adventure and their shared interest in The Lord of the Rings.
Candy-Waters said: “There’s a line Samwise says to Frodo that struck a chord with me: ‘I can’t carry it for you, but I can carry you’.”
The family’s GoFundMe page, launched to support research and raise awareness of H-ABC, aims to continue the momentum created by the viral video.
Candy-Waters added the campaign is focused on helping other families affected by the condition.
He said: “Beyond fundraising, I feel like a key focus now is really about raising awareness, ensuring families like ours don’t have to walk this road alone.
“Aggies taught me that real strength doesn’t have to be loud. It’s gentle, patient and full of love.
“She’s taught me empathy, to look at the world with softer eyes and to see people the way she does, beyond the surface of things.
“She’s changed the way I see everything.”
Feature image: Used with permission of Finn Candy-Water
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