Western Daily Press (Saturday)
‘Positivity’ the key after boy, 9, found to have dementia
WATCHING a parent or grandparent slowly disappear before your eyes due to dementia is incredibly heartbreaking, but what if you were faced with supporting your child through this same debilitating condition?
Joshua Glover’s family has to cope with the heartbreak of seeing the nine-year-old boy from Gloucester slowly deteriorate before their very eyes each day.
His family had started to notice his memory was “not as it should be” in 2019, and there were other signs later on, such as when he could not remember Father Christmas.
It was only when the family took part in a genetics study in January last year that it was discovered Joshua was suffering from the life-limiting Batten’s disease, despite signs of the condition starting to show five years ago.
Batten’s disease is the common name for a broad class of rare, fatal, inherited nervous system disorders for which common symptoms include vision loss, seizures, delay and eventual loss of skills previously acquired, dementia and abnormal movements.
Sadly, many children who are diagnosed with the condition rarely live beyond 12 years old.
Joshua’s mum, Ali Glover, 37, said: “Joshua started to have problems with his sight when he was in reception class at school at four years old.
“I took him to the optician as he was standing up close in front of the television. At first I thought he may need glasses. However, during the test they saw there was a dark colouring on the back of his eye in the retina.
“We were referred to the hospital by an optometrist. They initially diagnosed muscular dystrophy and then over the next few weeks he lost most of his sight.”
Joshua’s eyesight is at the stage now where he can only really see colours and shapes. It has not completely gone, but he is missing large patches in his vision.
As the family were told his eyesight would continue to deteriorate, they did their best to make sure Joshua could take in as much of the world visually before it got to a stage where he lost his sight entirely.
He has enjoyed wonderful times visiting DisneyLand, going on holiday, plus taking trips to the zoo with his family.
But Joshua’s eyesight was not the only problem.
Mrs Glover said: “We started noticing his memory was not as it should be in 2019.
“For example, when he was climbing into bed, Joshua would almost forget how he should manoeuvre his legs to get in the bed.
“Another time, his grandfather called and Joshua did not know who it was on the phone. He did not recognise his grandfather’s voice.
“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.”
The family raised concerns with their doctor about Joshua’s memory, so they were referred for tests, which were carried out at hospitals in Gloucester and Bristol.
Mrs Glover said: “The test results showed Joshua had brain damage and epilepsy, which were not connected with the eyesight deterioration.
“I really thought that was a lot to process at the time.”
However, when the results of the genetics study came back in January 2020, Mrs Glover and her husband Jon, 33, were asked to visit hospital to discuss the results.
Mrs Glover said: “We had a call and were asked to go to an appointment at the genetics department at the hospital.
“We called ahead as at this point Joshua’s behaviour was getting hard and we wondered if we would really need to take him to the appointment.
“We got into the room. I read the room and realised this was not going to be good news as there was a counsellor there as well as the geneticist.
“We were told Joshua has Batten’s
disease and had a little about the condition explained. I asked outright if it was a life-limiting condition and we were told yes.”
This news shocked Mr and Mrs Glover to the core.
They knew their son was living with a disability, but now they were faced with knowing Batten’s disease limits the lives of young people.
The family were told that Joshua’s memory loss was because he had dementia.
Mrs Glover said: “We went to collect the boys after school. Nothing had changed for them, but we picked them up knowing everything had.
“I needed some time to process what was happening to us. I don’t think I spoke to anyone about the condition for a couple of months. It was a lot to take in.”
During summer last year, Joshua’s mobility took a turn for the worse and he was now needing to use a wheelchair.
However, he has been supported by teachers, staff and pupils at Calton Primary school, which he attends.
Mrs Glover said: “I am not wanting to spend time in the past, and the time we have got I am trying to not be down.
“It is hard and my husband is coping by being practical and doing things for charity by organising 10K coast-to-coast walks for the Batten
Disease Family Association. They have been brilliant, supporting me and being on the phone whenever I need them.”
Life is very much a struggle for the family, but they are looking to embrace every day with positivity despite knowing what the future may hold in just a few years’ time.
Mrs Glover said: “Dementia is a big part of the condition. 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.
“He used to be a runner and his teacher would call him the Duracell bunny as he would just go and go. Saying that, even though he cannot run, he is able to access cycling facilities and horse riding, which is good for his posture, and he loves swimming.
“Joshua remains very sociable and the children at his school are brilliant with him in making sure he is included in games.
“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 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.”
We have not given up hope there will be a treatment or cure for him one day ALI GLOVER