A five-year-old boy with dementia who had forgotten his parents can now recognise them again after a pioneering medical trial that implanted a chip in his head.
Harley Bond, from Sheffield, was diagnosed with Sanfilippo syndrome – a rare type of childhood dementia that causes permanent brain damage – when he was just three years old.
His parents Wayne Bond, 47, and Emma Siddal, 38, were heartbroken when Harley lost the ability to recognise them and stopped calling them ‘mummy’ and ‘daddy’.
Despite the little boy regular development in the first few months of his life, Wayne and Emma began to worry as his speech started to deteriorate when he was three and he kept getting colds and infections.
Dad Wayne explained:
He was born completely fine and developing well, but then everything changed. He was really boisterous with other kids and his nose was always runny, he kept getting infections and started to lose his speech.
When he went to the park, or was with other kids, we knew there was something up because he just didn’t act like everyone else, he was really boisterous. He couldn’t remember simple things like knowing how to use the toilet or what was food and what was not.
The doting parents were devastated when they were told Harley had Sanfilippo syndrome type B in 2016, particularly when his symptoms started to get worse. Emma, a full-time carer, described the months Harley couldn’t recognise them as ‘heartbreaking’.
The young boy soon lost the ability to know what was safe to eat, and would try to eat plants, bushes and rocks, leading to his family having to look after him as though he was a baby. He also developed sleep apnoea, which meant he would stop breathing momentarily throughout the night.
Now though, after being enrolled on a new clinical trial at Great Ormond Street Hospital, London, Harley’s speech and ability have both started to improve, and the five-year-old can recognise his parents once more.
The trial, which is still underway, involved implanting a chip into Harley’s head that releases small quantities of the enzyme his body is missing, alpha-N-acetylglucosaminidase, directly into the brain.
Doctors at Great Ormond Street Hospital are facilitating the device, tracking his progress and keeping on top of his condition. In the meantime, Wayne and Emma are thrilled the treatment appears to have stopped Harley’s condition worsening.
Although his parents say Harley still has some bad days, Emma says they have been given ‘a little bit of hope for the future’. She added: ‘We realise that it won’t cure him, but it might give us a few extra precious years with our brave son.’
Since being on the trial, Wayne said Harley’s condition had ‘stabilised’, with the five-year-old remembering words he could previously no longer say and recognising them as ‘mum’ and ‘dad’ again.
The proud father explained:
When you watch him go through all of this, he seems invincible – he rarely complains about any of it. We have good and bad days, but we’re cherishing the time we have with him and hopefully the treatment will work, and we’ll have him for many more years to come.
We try to do everything we can to stay positive and being mentally positive is the hardest part. Kids with this syndrome don’t make it to adulthood so we know we just have to enjoy the time we have with him.
The whole thing is soul- destroying because we’re looking at our little boy and he’s dying.
The trial is currently being offered by US pharmaceutical companies, with 22 children having already used or currently using this particular trial.
The family are now looking to the future, with mum Emma saying they are ‘so proud’ of their little boy.
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A Broadcast Journalism Masters graduate who went on to achieve an NCTJ level 3 Diploma in Journalism, Lucy has done stints at ITV, BBC Inside Out and Key 103. While working as a journalist for UNILAD, Lucy has reported on breaking news stories while also writing features about mental health, cervical screening awareness, and Little Mix (who she is unapologetically obsessed with).