A two-year-old boy is believed to be the youngest person in Britain ever to be diagnosed with a rare brain condition labelled the childhood version of Alzheimer’s.
Reggie Griffiths is battling Sanfilippo syndrome, a condition that destroys the brain in a similar way to Alzheimer’s disease. It affects just one in 70,000 people and his parents have been told he may not live past the age of twenty.
His parents took him to hospital in Stoke-on-Trent thinking he might have autism after they noticed his development was slow and he often rocked back and forth. However, the diagnosis was much worse with the rare terminal condition meaning Reggie will lose his memory as his mind and body deteriorate.
The condition causes brain cells to fill up with cell waste which the body cannot get rid of over time, this causes the brain cells to die and the organ to stop working.
Children who have the condition will often have a broad nose and a big forehead and the Paediatrician at Stoke noticed this before transferring the two-year-old to the Birmingham Children’s Hospital for further tests.
Because Reggie’s brain is so damaged he does not speak, although his mother says he did say the word ‘dad’ once.
His mother Rebecca Griffiths said: “He is hyperactive, non-verbal, has sleep apnoea and his behaviour can be hard to deal with but a lot of the time he can be a happy smiley little boy.
“It’s called a childhood illness as this condition means they don’t live past 20, so we’re going to create as many happy memories as we can for him.
“His body will eventually shut down and then he will forget everything he has learned.”
The family is now planning a number of fundraisers in their hometown to help fund research into the condition.
They hope that one day a cure can be found and are promoting The Society for Mucopolysaccharide Diseases (MPS Society), with the aim that one day someone can say “my child used to have that”.