Adrenoleukodystrophy, or ALD, is a deadly genetic disease that affects 1 in 18,000 people. The brain disorder destroys myelin, the protective sheath that surrounds the brains neurons – the nerve cells that allow us to think and control our muscles.

The most devastating thing about this condition is that it appears in childhood, most commonly in boys, generally between the ages of 4 and 10 years. Normal healthy children suddenly begin to regress. At first they show signs of behavioural problems such as withdrawal or difficulty in concentration. Gradually, as the disease ravages the brain, the symptoms grow worse including blindness, deafness, seizures, loss of muscle control and progressive dementia. The relentless downward spiral leads to permanent disability or death usually within 2-5 years from diagnosis.

In August 2015, Tyler Glover was diagnosed with ALD and only 6-9 weeks after his diagnosis he went completely blind and had also started to lose his hearing. He went back to school and tried to carry on with his daily routine but eventually he couldn’t cope as he went through the dementia phase. Tyler eventually went to a disability school in November 2015 which has helped him dramatically.

Several months later Tyler’s speech started deteriorating and he had to have a gastrostomy tube fitted. It seemed that he had given up as he looked drained and didn’t want to walk so he received his first wheelchair and disability badge in February but, by the end of March, he was in a vegetative state getting severe spasms causing him a lot of discomfort.

This disease isn’t something any child should go through. The charity ALD Life and many parents are trying to get babies tested at birth for this condition; if it’s detected there is a chance they can help with a stem cell replacement or bone marrow transplant.

Tyler has always had a smile on his face which will stay with you forever and he is an inspiration to many.