Boy, 5, with dementia can recognise parents again after chip implanted in brain

A five-year-old who couldn’t remember his parents after suffering with a rare type of dementia, can now recognise them again after having a microchip implanted in his brain.

Little Harley Bond was diagnosed with Sanfilippo Syndrome type B when he was three – an rare type of childhood dementia which causes permanent brain damage.

Parents Wayne Bond, 47, and Emma Siddal, 38, from Sheffield, were devastated when he stopped saying ‘mummy’ and ‘daddy’, after he had forgotten who they were.

But after he was enrolled on a new clinical trial – involving 22 children worldwide – at Great Ormond Street Hospital, they were thrilled when both his speech and ability started to improve.

Little Harley can now recognise his parents again, after a microchip was implanted in his brain, which releases small quantities of a missing enzyme that causes symptoms to get worse.

His parents said Harley still has bad days as sometimes ‘he’s completely in control of himself but other days he can’t move’, however, the treatment appears to have stopped the condition deteriorating.

Mum Emma, a full-time carer, said: ‘It was heartbreaking in the months he couldn’t recognise us, he struggled to make eye contact, and didn’t call us mum and dad.

‘The trial is doing well, and it’s really giving us a little bit of hope for the future, getting on it was potluck and we’re happy he is responding well.

‘We realise, however, that it won’t cure him, but it might give us a few extra precious years with our brave son.’

Despite Harley developing at a normal rate in the first few months after he was born, Emma and Wayne began to worry when he kept getting infections and a runny nose.

Wayne said: ‘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’.

The father added that his son soon couldn’t remember how to use the toilet or what was safe to eat and chewed plants, bushes, and rocks.

His speech began to worsen when he was three and the little boy would often stop breathing momentarily in the night, after developing sleep apnoea from the condition.

The parents were devastated when medics diagnosed Harley with a life-limiting condition and decided to put him forward for the experimental treatment in 2017.

Wayne continued: ‘The hospital spoke to us about options and let us know about this new trial, but they told us he would need to do a year of studying to assess his memory.

‘Luckily his memory was good enough to be able to get onto the trial, he could remember enough of what he was told to show there was hope he could be saved.

‘It was going well but then he had a bad patch for a few months… the whole thing is soul destroying because we’re looking at our little boy and he’s dying.

‘We try to do everything we can to stay positive, which 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.

‘Knowing that our son has dementia was hard to even comprehend, but that’s why it’s so important that everyone starts to know that it is possible and that it isn’t just older people this disease can effect’.

Thomas Mathers, CEO of drug giant Allievex, one half of the firm running the trials, explained: ‘In general Sanfilippo is a disorder, and in these children, they have a genetic mutation which stops them from being able to produce a certain enzyme that they need otherwise their neurons will be killed off.

‘We have a device that is implanted into the child’s head which releases a synthetic version of the missing enzyme directly into the brain that washes the sugar build up which causes the neurons to be killed’.

What is Sanfilippo Syndrome?

According to Sanfilippo Children’s Foundation, it is a rare genetic condition that causes fatal brain damage. It is a type of childhood dementia and most patients never reach adulthood.

Sanfilippo, or MPSIII, is considered a rare disease – 1 in 70,000 children are born with the inherited condition.

It is a metabolic disorder which means there is a problem with one of the chemical reactions that naturally occurs in the body. It is caused by a lack of an enzyme

It affects mostly the brain and is one of a group of conditions called ‘childhood dementia’. Over time, brain cells fill up with waste that the body is unable to process.

As the brain gets progressively damaged, children experience severe hyperactivity, disordered sleep, loss of speech, intellectual disability, cardiac issues, seizures, loss of mobility, and finally death, usually before adulthood.

There is currently no treatment or cure available but there is hope. Researchers around the world are working hard to find effective treatments.

Dspite the ongoing enzyme replacement therapy, Harley still suffers with a multitude of difficulties but hasn’t let it get in the way of enjoying his childhood.

Wayne said: ‘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.

‘He’s such a strong lad, and he gives us glimpses of his personality when he can, which we love.’

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