Five-year dementia sufferer who forgets his parents recognizes them again after pioneering treatment.
Harley Bond of Sheffield was diagnosed with Sanfilipo syndrome at only three.
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The rare disorder causes the brain to "fill up with waste", leading to irreversible damage5, [19459theSanfilipoChildren'sFoundation.
The parents of Harley Wayne Bond, 47, and Emma Sidal, 38, were devastated when their son no longer knew who they were and stopped saying "Mom" and "Dad." [1
Without treatment or treatment, the youth was enrolled in a clinical trial at Great Ormond Street Hospital (GOSH) that implanted a chip in his brain.
The chip releases small amounts of an enzyme that is deficient
Gradually Harley's speech began to improve as he now calls on his parents.
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Sanfilipo syndrome affects about one in every 70,000 children, statistics show the Sanfilipo Children's Foundation.
Inherited disorder disrupts one of the chemical reactions that must occur naturally in the body.
This is due to a missing enzyme that normally breaks down and recycles a large sugar molecule called heparan sulfate.
Sanfilippo is considered to be a form of childhood dementia, with symptoms including speech loss, severe hyperactivity, insomnia, ss mobility, heart problems, seizures and premature death.
Harley's parents are first worried when he is only a few months old.
"He was born perfectly well and is doing well, but then everything changed," said Mr Bond.
"He was really boisterous with other children and his nose was always runny; he kept getting infections. "
By the time he was three years old, his speech began to worsen.
Later, Harley was diagnosed with Sanfilippo type B syndrome in 2016.
The condition was four subtypes – A, B, C and D – depending on the enzyme that is missing.
The progressive condition caused Harley to develop sleep apnea, which led him to not breathe at night.
later he would try to eat plants, shrubs and rocks.
"He couldn't remember simple things, such as knowing how to use the toilet or what was food and whatnot, "Mr. Bond
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GOSH medics contact Harley's parents to help
"The hospital spoke to us and informed us of this new trial, but they told us that it would take a year to evaluate its memory," Mr Bond said.
"Fortunately, his memory was good enough for him to be involved in the process.
" He could remember sufficiently what he had been told that there was hope that he could be saved. "
Although the process is going well, Harley's condition has temporarily turned worse.
"He had a bad patch for a few months," Mr. Bond said.
"He didn't know who we were and he couldn't even call us Mom or Dad.
"The whole thing is the destruction of the soul. "
Miss Siddall, who looks after Harley full time, added:" It was heartbreaking during the months that he could not recognize us.
Despite the failure, Harley responded well to the overall implant.
"This gives us some hope for the future," said Mr Bond.
"We realize that he won" I don't cure him, but it can give us a few extra valuable years with our brave son. "
The life span of a patient from Sanfilippo is between 10 and 20 years, according to the Foundation of the Sanfilippo Team .
"With the clinical trial he is on, he has good days and says bad," said Mr Bond.
"Of course, this condition must worsen and worsen, which is not the case with Harley; sometimes he is in complete control of himself, but on other days he cannot move. ”
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Despite all his endurance, in many respects Harley is like any other young child.
"When you watch him go through all this, he seems invincible, rarely complains," said Mr. Bond.
"He is such a strong guy and gives us an idea of his personality when he can, which we we love. "
The couple is working hard to stay positive, despite
" We have good and bad days, but we appreciate the time we have with him and hope the treatment will work and we will have many more years to come. " "Mr. Bond said.
" Sometimes he forgets who we are and that is awful, but we always remain strong and that makes our family a unit of strength because we have lived through it all and remain resilient together. "
Miss Siddall added: "We are so proud of everything our little boy accomplishes, we thought he would just worse, but in some cases it seems to be improving slightly. "
The couple talked about raising awareness of childhood dementia.
" To know that our son has dementia was difficult to understand, but that's why so important once everyone begins to know that it is possible and not only the elderly can affect the disease, "said Mr Bond.
The test is offered by two pharmaceutical companies in the USA.
Thomas Mathers, CEO of the drug giant Allievex – one of the trial companies – added: "These children have a genetic mutation that stops them from producing the specific enzyme they need, otherwise their neurons will be destroyed.
"We have a device that is implanted in the head of a child that releases a synthetic version of the missing enzyme directly into the brain, which flushes out the sugar accumulation that causes neuronal killing.
"There are 22 children in the world who have used or are using this process. "