Just over a year ago, Will Downes was an active young boy who enjoyed playing football and seeing his friends.
Fast forward 12 months and the ten-year-old Park House Primary School pupil, in Lower Pilsey, is blind, cannot walk and can hardly talk.
This is because he has a rare genetic brain disease called Adrenoleukodystrophy (ALD) which affects around one in 20,000 boys and men. It destroys the brain, causing a progressive loss of physical and mental skills. It is not treatable.
ALD is an X-linked recessive disorder, which means that only boys are affected.
The disease leads to the build-up of dangerous long-chain fatty acids.
Normally a child will have been well for the first few years of life but hyperactivity may develop along with disruptive behaviour and memory and learning difficulties.
And that’s exactly what happened to Will, as his mum Emma, 43, explains. She said: “Will grew up a normal boy. This time last year he was playing out with his friends and climbing Creswell Crags.”
The Spireites fan was always a well behaved and kind boy but around September 2017 he started falling behind at school and started shouting out in class and had problems with his eyesight.
The situation was so concerning that Will was seen by an educational psychologist.
Over the next few months he was taken to Chesterfield Royal Hospital to be checked for the possibility of having a brain tumour.
He was eventually diagnosed with ALD after a visit to A&E.
The situation has totally rocked the Downes family, including Will’s seven-year-old sister Ella and dad Chris, 50, who think the world of him.
The disease is most famously known for being the subject of an American film called Lorenzo’s Oil - a true story about a man called Augusto Odone who invents a treatment for his six-year-old son, Lorenzo, who was diagnosed with ALD and was given two years to live. He lived until the age of 30.
Despite’s Will’s bravery, his condition is getting worse and his home is currently being adapted to suit his needs.
“Over this past month it has been a rapid deterioration,” Emma said. “Eventually he will be in a vegetative state.”
Pupils at his school have rallied around him, with two boys completing a charity walk and a girl completing a swim. In June his classmates are doing a mud run for ALD and Cancer Research. To make a donation, click here
The youngster has also received a lot of support from his junior football team, Pilsley Football Club and Clay Cross Junior Football Club and next month he will to meet the players at Manchester United.
For the time being, the Downes family are making the most of each day with Will and giving him lots of support and love.