Our hearts broke when he couldn’t recognize us, he struggled to make contact with us, and he no longer called us ‘Mom and Dad’. This pioneering operation gives us little hope, says the mother
Harley Bond (5), a boy from Sheffield, United Kingdom, underwent a pioneering medical examination at Great Ormond Street Hospital after doctors at the age of three diagnosed me with Sanfilippo syndrome, a rare form of childhood dementia. He had a microchip embedded in his skull because he had lost his memory and no longer recognized his parents.
Wayne Bond, 47, and Emma Siddal, 38, were heartbroken when they realized, several months after their diagnosis, that their child no longer knew them, no longer telling them ‘mom’ and ‘dad’. It was a terrible period in their lives. They watched their own son, who had barely begun to live, to land and to disappear mentally.
After incorporating a microchip into his skull, little Harley recognized them, and his speech and other abilities he was losing improved. Her mother remembered what it was like and how much this operation meant to them.
We were broken for months when he could not recognize us, he struggled to make contact with us and he no longer called us ‘mom and dad’. This pioneering effort really gives us some hope for the future. We are happy that he is responding well, however, we are aware that it will not cure him, but it may give us a few precious years more with our brave son. We try to stay positive because children with this syndrome do not survive to adulthood, so we simply have to enjoy the time we have with him, ”she said with teary eyes.
5 YEAR OLD DEMENTIA REVERSED | Author: CATERS NEWS AGENCYfoto: CATERS NEWS AGENCY
He says Harley was developing well as a baby, until his third year, when his speech began to deteriorate, his nose began to constantly leak, he became more and more infectious and lost his speaking power more and more.
He couldn’t think of simple things, like how to use the toilet or what was food and what wasn’t. We were told at the hospital about this pioneering operation and luckily his memory was still good enough to be able to access the procedure. There was hope – the mother continued.
Otherwise, this syndrome affects one in 70,000 children, and most of them die as early as childhood. Harley is one of 22 children in the world to be approved for this pioneering medical trial funded by US pharmaceutical companies.
The task of a microchip embedded in the skull is to release a small amount of the missing enzymes that are responsible for the normal degradation and recycling of large sugar molecules (heparan sulfate). In a syndrome such as this boy, toxic material builds up which results in symptoms similar to dementia, speech loss, blindness and possible death.
“A device embedded in a baby’s head releases a synthetic version of the missing enzymes directly into the brain and flushes out the accumulated sugar that causes neuronal destruction,” explained Thomas Mathers, CEO of pharmaceutical giant Allievex.