Daily Mirror (Northern Ireland)
THE MEMORY CHIP
Hi-tech implant treats lad’s childhood dementia by releasing brain enzyme
A BOY of five with a rare form of childhood dementia can recognise his parents again after a pioneering op to implant a chip in his head.
Harley Bond was diagnosed with Sanfilippo syndrome, an enzyme deficiency that damages neurons in the brain, aged three in 2016.
Parents Wayne Bond, 47, and Emma Siddal, 38, were devastated when his speech and abilities deteriorated.
But since he was fitted with the chip at Great Ormond Street Hospital as part of a trial in 2017, his condition has improved significantly.
The implant releases small amounts of the missing enzyme, slowing damage to neurons.
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 giving us a bit of hope, we’re happy he is responding well.”
Emma said the treatment will not cure Harley but it might give them “a few extra precious years with our brave son”. Harley was diagnosed after persistent infections and colds. His speech was deteriorating and he was trying to eat things like plants and rocks. Wayne said: “He was developing well, then everything changed. He was boisterous with other kids and his nose was always runny. He kept getting infections and started to lose his speech. He couldn’t remember simple things like knowing how to use the toilet or what was food and what was not.”
Sanfilippo syndrome hits one in 70,000 children and Wayne wants to raise awareness that it is not just older people affected by dementia.
He said: “We try to do everything we can to stay positive. 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.
“Before the trial, Harley was just getting worse but since he has been on it, he has remembered words he could no longer say, he recognises us and the condition seems to have stabilised.”
The trial is funded by US pharma giants including Allievex and 22 children have used or are using the implant.