A five-year-old dementia patient who has forgotten his parents recognizes her after a groundbreaking treatment.
Sheffield Harley Bond was diagnosed with Sanfilippo syndrome at just three years old.
READ MORE: Excessive naps could be a sign of Alzheimer's disease.
The rare disorder causes the brain to 'fill up' with waste, causing irreversible damage. According to the Sanfilippo Children's Foundation .
Harley's parents Wayne Bond (47) and Emma Siddal (38) were devastated when their son no longer knew who they were and stopped saying "Mom" and "Dad." 1
Without cure or treatment, the adolescent was enrolled in a clinical study at the Great Ormond Street Hospital (GOSH) where a chip was implanted in his brain.
The chip releases small amounts of an enzyme found in Sanfilippo Patient Lacks
Gradually Harley's language improved, and he called for his parents.
READ MORE : Record-setting Dementia Diagnosis: Learn How to Recognize Signs
According to Sanfilippo Children's Foundation statistics, Sanfilippo syndrome occurs in about one in 70,000 children.
The genetic disorder interferes with one of the chemical reactions that should naturally occur in the body.
A missing enzyme that normally degrades and recycles a large sugar molecule called heparan sulfate.
Sanfilippo is considered to be a form of childhood dementia, with symptoms such as speech loss, severe hyperactivity, insomnia, etc. Mobility disorders, heart problems, seizures and premature death.
Harley's parents were worried for the first time when he was only a few months old.
"He was born very well and developed well, but then everything changed," Bond said children and his nose was always fluid, he was constantly getting infections.
When he turned three, his language began to deteriorate.
Harley later diagnosed Sanfilippo syndrome type B in 2016.
The Disease There were four subtypes, depending on the missing enzyme – A, B, C, and D.
Due to the progressive condition, Harley developed sleep apnea, which caused him to not breath at night.
Later he tried to eat plants, bushes and stones.
"He could not remember simple things like using the toilet or what was food and what was not," said Mr. Bond.
READ MORE: Confusion about money co An early sign of dementia
GOSH's medical doctors contacted Harley's parents to suggest that he enroll for an experimental treatment ,
"The hospital talked to us and informed us about this new study, but they told us he needed to study for a year to assess his memory," Bond said.
"Fortunately, his memory was good enough to attend the trial.
"He could remember enough what he was told to show that there is hope that he can be saved.
Although the process is going well, Harley's condition deteriorated temporarily.
"He had a bad spot for a few months. "Mr. Bond said.
"He did not know who we were and could not even call us mom or dad.
" The whole thing destroys the soul.
Miss Siddal, who is fully concerned about Harley Zeit, added: "It was heartbreaking in the months when he could not recognize us, he had trouble making eye contact with us."
Despite the setback, Harley generally responds well to the implant.
"It gives us some hope for the future," said Mr. Bond.
"We recognize that it has won. I can not heal it, but it could bring us some precious years with our brave son. "
The life expectancy of a Sanfilippo patient is between 10 and 20 years, according to the Team Sanfilippo Foundation. .
"He has good and bad days with the clinical trial he attends," Bond said.
"Of course this condition should continue to worsen, which is not the case with Harley. Sometimes he has full control over himself, but on other days he can not move.
READ MORE: Early Signs of Alzheimer's Disease in Patients from the Age of 20
Despite All In many ways, he has endured Harley like any other small child.
"When you watch him go through all this, he seems invincible, he rarely complains," Bond said.
"He is such a strong boy and gives us insights into his personality, though he can, whom we love. "The setbacks."
"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 him many more years," said Mr. Bond.  "Sometimes he forgets who we are and it is terrible, but we always remain strong and it has made our family a unity of strength because we have gone through everything and together remain resilient."
Miss Siddal added: "We are so proud of everything our little boy achieves that we thought he would only get worse, but in some cases he seems to improve only slightly."
The couple speaks out to raise awareness of To sharpen dementia in children.
Knowing that our son suffers from dementia was difficult to understand, but that's why it's so important when not everyone knows it's possible, and not just the elderly, from this disease it can be affected, Bond said.
The study is being offered by two US pharmaceutical companies.
Thomas Mathers, CEO of the drug The giant Allievex – one of the companies doing the experiments – added, "These children have a genetic mutation that prevents them from producing a particular enzyme that they need, otherwise their neurons are killed.
is implanted in the child's head, releasing a synthetic version of the missing enzyme directly into the brain, which washes the sugar buildup, killing the neurons.
"Worldwide, we have 22 children who have used this enzyme or are trying. "