Gloucestershire boy with dementia ‘can’t remember Father Christmas’
A mother from Gloucestershire has spoken of her heartbreak after her son was diagnosed with dementia aged nine.
Ali Glover first started noticing her son Joshua’s memory was “not as it should be” in 2019, when he stopped recognising Father Christmas.
But it was only when he took part in a genetics study in January 2020 that Joshua’s condition was diagnosed.
He has Batten’s Disease, which is the common name for a broad class of rare, fetal, inherited nervous system disorders.
Common symptoms include vision loss, seizures, delay, eventual loss of skills and dementia.
Sadly, many children who are diagnosed with the condition rarely live beyond 12-years-old.
‘He did not recognise his grandfather’s voice’
Ali said Joshua first started experiencing problems with his sight when he was just four-years-old.
“I took him to the optician as he was standing up close in front of the television,” Ali explained.
He was diagnosed with Macular Dystrophy, and the family were told his sight would worsen over time.
But in 2019, Joshua also started experiencing memory loss.
“We had however started noticing his memory was not as it should be in 2019,” Ali continued.
“We also were showing him at Christmas time pictures of Father Christmas. He had no clue who Father Christmas was or what any of it was all about. “
Subsequent tests at hospitals in Bristol and Gloucester revealed Joshua had brain damage and epilepsy, which were not connected to his eyesight.
But, after taking part in the genetics study in January 2020, Ali and her husband John were called by doctors and asked to come in.
“It was a lot to take in."
Despite the diagnosis, the family say they are determined to enjoy their time with Joshua and hope for a cure.
“I am not wanting to spend time in the past and the time we have got I am trying to not be down,” Ali added.
“We wake to see what type of Joshua we are having that day.
“He can be very frustrated and not happy and the next day he is back.
“Everyone has come together. His younger brother Andrew has now filled the big brother role and likes to help with Joshua putting on his shoes and hat for example.
“There are 13 types of Batten’s Disease and Joshua’s type is super rare. For one of the types there is treatment even though there is not a cure.
“We have not given up hope there will be a treatment or cure for him one day.”
Read more: