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Sheffield family's our world fell apart when son's drug trial ended
Harley Bond, pictured with his parents Emma Siddall and Wayne Bond, was diagnosed with Sanfillipo syndrome in 2016
The family of an 11-year-old boy with a rare form of childhood dementia say their world has "fallen apart" since a clinical trial ended abruptly.
Harley Bond was diagnosed with Sanfillipo syndrome in 2016 and began taking part in the drug trial in 2017.
But, when his treatment was withdrawn last year his parents said it "was like being diagnosed all over again".
In a letter, seen by the BBC, US firm Allievex said it lacked "sufficient capital" to continue the trial.
Harley, from Sheffield, was four when he was diagnosed with the disorder, a terminal condition which gradually limits a child's ability to walk, talk and eat.
Doctors said he was not expected to live past 14, but his family was given fresh hope when he started taking the drug Tralesinidase Alfa as part of a trial at London's Great Ormond Street Hospital.
Before he started taking the drug his parents, Emma Siddall and Wayne Bond, said their son's behaviour had become "increasingly erratic".
Mr Bond said: "He completely stopped, as if nobody was there. His speech had totally gone, [he was] very erratic... like a Tasmanian devil."
But when he started treatment, Mr Bond said his condition stabilised and he started using new words.
"He started coming back to us. He was like a new child again."
Harley was taking part in a clinical trial of the drug Tralesinidase Alfa
However, despite the drug showing promising results, the trial used to treat Harley and 14 other children was halted in October.
Miss Siddall said: "It was like being diagnosed all over again. Your world just falls apart, you hit rock bottom."
The couple say they are now bracing themselves for changes in Harley's condition.
Mr Bond said: "We know it's coming. Nobody can give us a date when, but the trial was a clean sweep of the toxins and we know it's going to start building up again in his brain and in all his organs."
In the letter the company told clinicians "all clinical activity should be stopped without delay".
It stated the company had been told a new "controlled clinical trial will be necessary to confirm the clinical benefit" of the drug but that it did not have the money to fund it.
Speaking to the Guardian, Tom Mathers, the chief executive of Allievex, said pausing the trial had been the "hardest decision I've ever had to make" adding that it was "frustrating because we have a treatment that we know works".
A spokesperson for Great Ormond Street Hospital said: "We know how impossibly hard this situation is for all involved and our efforts are now focused on supporting Harley and his family.
"Our teams will continue to work closely with them, and others at GOSH, who have been impacted by this news, as we explore options and support them through their next steps."
Elon Musk has created Neuralink implanted wireless brain chip for disabled people
Tech billionaire Elon Musk has claimed his Neuralink company has successfully implanted one of its wireless brain chips in a human.
In a post on X, formerly Twitter, he said "promising" brain activity had been detected after the procedure and the patient was "recovering well".
The company's goal is to connect human brains to computers to help tackle complex neurological conditions.
A number of rival firms have already implanted similar devices.
"For any company producing medical devices, the first test in humans is a significant milestone," said Professor Anne Vanhoestenberghe of King's College London.
"For the brain computer interface community, we must place this news in the context that whilst there are many companies working on exciting products, there are only a few other companies who have implanted their devices in humans, so Neuralink has joined a rather small group."
However, she also suggested there needed to be a note of caution as "true success" could only be evaluated in the long-term.
"We know Elon Musk is very adept at generating publicity for his company," she added.
There has been no independent verification of Mr Musk's claims, nor has Neuralink provided any information about the procedure he says has taken place.
BBC News has approached both Neuralink and the US's medical regulator, the Food and Drug Administration (FDA), for comment.
Neuralink has been criticised in the past, with Reuters reporting in December 2022 that the company engaged in testing which resulted in the deaths of approximately 1,500 animals, including sheep, monkeys and pigs.
In July 2023, the head of the US Department of Agriculture - which investigates animal welfare concerns - said it had not found any violations of animal research rules at the firm.
However, a separate investigation by the agency is ongoing.
That gave the green light for the start of the six-year study during which a robot is being used to surgically place 64 flexible threads, thinner than a human hair, on to a part of the brain that controls "movement intention", according to Neuralink.
The company says that these threads allow its experimental implant - powered by a battery that can be charged wirelessly - to record and transmit brain signals wirelessly to an app that decodes how the person intends to move.
It has great potential to help people with neurological disorders in future and is an excellent example of how fundamental neuroscience research is being harnessed for medical advances," said Professor Tara Spires-Jones, president of the British Neuroscience Association.
"However, most of these interfaces require invasive neurosurgery and are still in experimental stages thus it will likely be many years before they are commonly available."
While Mr Musk's involvement raises the profile of Neuralink, some of his rivals have a track record dating back two decades. Utah-based Blackrock Neurotech implanted its first of many brain-computer interfaces in 2004.
Precision Neuroscience, formed by a Neuralink co-founder, also aims to help people with paralysis. And its implant resembles a very thin piece of tape that sits on the surface of the brain and can be implanted via a "cranial micro-slit", which it says is a much simpler procedure.
Existing devices have also generated results. In two separate recent US scientific studies, implants were used to monitor brain activity when a person tried to speak, which could then be decoded to help them communicate.
Blue Peter TV Show - Belfast teenager Zoe Rainey earns eight badges
Zoe Rainey says "anything is possible" with the right mindset
Fifteen-year-old Zoe Rainey has big ambitions - to present the world's longest-running children's TV programme, CBBC's Blue Peter.
While the bright lights of the studio may be a few years away yet, Zoe has already made a strong impression on the show.
The Belfast teenager has earned eight coveted Blue Peter badges since 2020.
They were awarded for achievements in sport, reading, environmentalism, music and art.
Zoe has spina bifida, hydrocephalus, epilepsy and associated complications, which have required her to undergo 11 brain surgeries.
"I'm so proud of myself, I'm really happy and it just goes to show people even if you have a disability, anything is possible when you believe in yourself and you have a great mindset," she told BBC News NI.
"One of Zoe's mottos is 'never give up'... she's always smiling" - Zoe's mum Kirsty
"From that episode, she was totally hooked and she hasn't missed a single episode since," Zoe's mum Kirsty explained.
As the family were shielding at home, Zoe focused on learning how to cook and bake, and she was inspired to write to the programme to earn her first badge.
Zoe started watching Blue Peter because of presenter Adam B
Blue badges are awarded for sending in interesting letters, stories, craft creations and ideas.
"So she she sat down with her iPad, typed her own letter, added her photos and then asked us if we could post it for her," Kirsty said.
"And that was the start of it once she got her first badge back. She was so excited. She was straight back on the website, and it was 'which one can I go for next?'," she added.
'I just kept on going'
Kirsty said the family try to focus on Zoe's abilities, rather than her disabilities, and she is eager to try as many new activities as possible.
"She's a happy, easy-going child and she loves a challenge," Kirsty explained.
"She will always give something a try, she really is a determined young lady... we'll always encourage her to take part in things that are appropriate for her and find a way for her to have the experiences."
Zoe raised over £6,000 for the Mary Peters Trust, an inclusive charity which helps young athletes
One of Zoe's biggest achievements earned her a sports badge when she raised over £6,000 for charity as part of the Mary Peters Trust's Pass the Torch campaign.
With a new hand cycle attachment for her wheelchair, and little practice beforehand, Zoe completed 11 laps (approximately 4km) of Belfast's Mary Peters Track in August 2021.
Olympic gold medallist Lady Mary even joined Zoe for a lap or two.
"It was just amazing, it was brilliant, I had a lot of fun and I did it all without having any breaks, no stopping, I just kept on going and - boom - did it," Zoe said.
Zoe was then awarded "fundraiser of the year" for her efforts and was invited to join Lady Mary at an awards dinner that December.
A second Blue Peter sports badge was earned for surfing and ice skating - opportunities made possible through the May Murray Foundation.
"She loved [the surfing] because she can also do that with her sister, we can all do things together, and it's just life as it should be, all getting out," Kirsty said.
"One of Zoe's mottos is 'never give up'. She sets a great example to us all. When she gets an idea about something that she wants to do, she finds a way to do it.
"Whatever it is, Zoe's up for the adventure."
Sheeran's design, seen in detail on the right, features piano keys and music notes
A green badge, made from a recycled yoghurt pot, puts Zoe alongside Sir David Attenborough - who was awarded one in 2019 - for her environmentalism efforts and ideas to encourage families to reduce their screen time.
Faithful Mollie Pearce said Harry had played an "excellent game"
Mollie Pearce might have fallen at the final hurdle of The Traitors and lost the £95k prize, but the model and healthcare assistant finds some comfort in what she achieved in opening up on her "double whammy" of disability - limb difference and living with a stoma.
Sid the stoma came into Mollie's life just a few years ago when she was 18 (she turned 22 on Sunday, 48 hours after the epic TV final).
Mollie had been diagnosed with ulcerative colitis aged 11. The autoimmune condition causes inflammation in the large intestine triggering ulcers and debilitating pain.
It came to dominate her teenage years stopping certain basic activities and the number of school days missed.
"When I was suffering with ulcerative colitis I couldn't be away from a toilet," she says.
Aged 18 she underwent "massive" surgery to have her colon removed and her small intestine diverted out of an opening in her abdomen known as a stoma.
"That colons in the bin," she says theatrically. "Now, my small intestine sticks outside of my stomach and I have a stoma bag over the top, which collects my waste.
"I would never have been able to do the missions in the middle of a field or the middle of a loch. So actually having a stoma bag is the best thing I've ever done."
It was something the Bristolian opened up about in the penultimate episode of this year's series when the final five were enjoying a celebratory dinner.
"I really struggled to get my head around the fact that I was going to have a stoma," she told her fellow finalists. "I wasn't prepared for it. Eighteen-years-old, you kind of want to be out enjoying yourself with your friends, not having this life changing surgery."
She says it felt right to open up at that point in the game.
"We'd got to the final and we were just celebrating. It just made me realise how far I'd come from that girl who was so unwell and couldn't leave the house."
An energetic island hopping trip around Greece two summers ago with her boyfriend, had given Mollie the confidence to take up the offer of appearing on The Traitors and take on the physical challenges including swimming and climbing, while wearing a stoma bag.
"I loved the physical missions," she says. "They were such a good break from all the mind games and it was a really good bonding experience. Sid's given me the kind of option to do these things."
In terms of the practicalities, Mollie says she didn't need any extra support throughout the series, and she got into a good routine. She changed her bag every three to four days and emptied it whenever she visited the loo.
Having ulcerative colitis was something going on inside her body whereas she has a much more visible impairment too.
Host Claudia Winkleman with contestants (left to right) Harry, Andrew, Evie, Jaz and Mollie
She says living with an invisible illness has been much harder to explain to people than her limb difference on her right hand. Without the visual evidence she has found people often think "you look so healthy but, really you are suffering so much."
As well as working as a hospital healthcare assistant in Bristol, it was Mollie's limb difference which landed her a glamorous side hustle - what she describes as "disability modelling".
"I saw a model in Primark who had one arm and I'd never seen a disability model before," she says.
"The way that model made me feel in that moment…I was like 'that is how I want to be for other people'."
Molly was initially signed as a model with limb difference, but now she is very comfortable showing off Sid too.
"It's a double whammy," she jokes. "Who doesn't want someone with one hand and a stoma bag?"
She says the reaction from her sto-mates, people who also have stomas, to her being on the show and modelling has been "amazing".
"It can be a bit of a taboo and I think it's super important that we do advocate for it, especially when it comes to younger people."
Molly says it was a "strange" time between finishing filming The Traitors and it coming out on TV - a gap of several months.
"You have this crazy experience and this massive adventure and then that's it. I was back working as a healthcare assistant at the hospital and you obviously can't talk to anyone about it."
At that point she was still coming to terms with the treachery Harry Clarke had served her, and which the nation had yet to see.
Harry said his "legs were shaking" as he was named the winner of The Traitors
Harry - one of the original three traitors - and, faithful, Mollie were the last players standing, after both voted to eliminate faithful Jaz Singh.
In the final moments of the series, Mollie had started to write Harry's name down for banishment, before changing her mind and voting for Jaz, leaving just her and Harry standing.
Her decision meant Harry won all £95,150 of the prize money - as if any traitors remain at the end of the game they take all the gold for themselves.
"Me and Harry are fine," she insists for the umpteenth time since leaving the castle.
"As a group we were super close. We were together every day, all day. You do build real bonds and also you don't have communication with your family and friends, they are your support system.
"It's hard finding out your friend's been lying to you, but I stuck with my heart and I am not going to hate myself for that."