27 December 2023 , 21:58
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The devastated family of a boy with a rare form of childhood dementia say they have been given a 'death sentence' after his treatment was withdrawn, it is reported.
Harley Bond forgot his mum and dad after he was diagnosed with Sanfilippo syndrome when he was just three. The type of life-limiting dementia, which can cause permanent brain damage, is extremely rare. Parents Wayne Bond and Emma Siddal were heartbroken after Harley's health declined and he went on to have a device implanted in his head to help him recover.
Wayne said at the time : "Before the trial started, Harley was just getting worse but since he has been on it, he has remembered words he could no longer say, he recognises us as mum and dad and the condition seems to of stabilised.
"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. Sometimes he forgets who we are and it’s awful, but we always remain strong and it’s made our family a unit of strength because we have been through it all and remain resilient together."
Harley Bond, five, was diagnosed with Sanfilippo syndrome when he was three years old (CATERS NEWS AGENCY)Now, according to reports in the Guardian the clinical trial that was treating Harley and 14 other children has been halted. A deal to buy the US-based drug maker, Allievex, has reportedly fallen through with the company now out of money.
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The outlet reports that in a letter Allievex told clinicians at Great Ormond Street children’s hospital in London, where two children were receiving the treatment, “all clinical activity should be stopped without delay”. The company reportedly said it had been unable to raise enough money to support a new trial, and said: “Know that this is a heartbreaking time for all Allievex employees and shareholders, clinicians, parents and most importantly, Sanfilippo patients.”
Wayne was reported to have said: “We’re extremely angry about it. It works. Harley’s living proof. There’s 22 other kids around the world that are living proof that it’s working but now it’s going to be denied so the next generations are going to suffer.” Wayne and his partner are now said to be pleading for a pharmaceutical company to support Allievex and restart the trial.
His parents said they were angry at the trial being halted (CATERS NEWS AGENCY)He added: “Please don’t give my son a death sentence. Let him enjoy his life like he has done for the last 11 years. Don’t take this chance away from Harley and all the other children that are benefiting. It really works. The doctors know it works. The nurses know it works. It’s heart-wrenching to know that we’re stranded, basically.”
Tom Mathers, the chief executive of Allievex, reportedly said it was the 'hardest decision' to pause the treatment and added that it was 'most frustrating' as they knew the treatment works and 'provides tremendous benefits to the children and their families.'
The device releases small quantities of the enzyme that is missing that causes his symptoms to get worse. Harley is one of just 22 children who have used or are using this trial worldwide.
A spokesperson for Great Ormond Street was also reported to have said: “We have been caring for Harley and his family for many years at GOSH and have seen the benefit of this research treatment for him and other patients. 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.”
The Mirror has contacted Allievex for comment.