A Bexley mum whose brave young boy recently lost his fight with a rare genetic disease has opened up about her four-year fight for his treatment and preserving his legacy.

Katie Glover, of Slade Green, is currently finalising the legal terms and conditions to be attached with her new charity, Tyler G's legacy, which will aim to provide grants to families of disabled children.

With the support of her family, Mrs Glover and her husband founded the group soon after receiving the heartbreaking diagnosis that their six-year-old son, Tyler, was suffering with Adrenoleukodystrophy (known as ALD), a degenerative condition which ravages the protective sheaths surrounding the brain's nerve cells.

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Speaking to News Shopper, Mrs Glover recollected the moment doctors broke the news that her "little cheeky boy" had contracted the deadly disease.

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Mum Katie with Tyler

"On August 15, 2015, we walked into the hospital for an appointment and as soon as we walked in we were told he had it.

"It was like I was in a bubble, it felt like everything was rushing past me," she said.

"I was being told by his teachers he wasn’t listening and being irritable, which wasn't like him at all.

However, this wasn't the first time the mum of two had encountered ALD as her brother had also been diagnosed with the condition at the age of 26.

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For the next four years after Tyler's diagnosis, both parents focused their energies on providing him with as happy a childhood as they could as he faced a number of horrific challenges, including the loss of his vision, hearing, and the use of his legs.

"We jumped over hurdle after hurdle for him.

"He walked into bed one night and he fell out the next morning. After that he just couldn't use his legs.

Tyler passed away at age 10 on March 16 while in respite care.

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"We took him there and after a few days his heart rate started to fluctuate pretty badly.

"Over time, he actually just yawned, smiled and passed away," said Mrs Glover.

However, Mrs Glover has since courageously ploughed on with plans for Tyler G's Legacy, which has raised thousands of pounds since its inception approximately three years ago.

"You do have to fight for everything with disabled child and our charity is to help other children that are in the same situation.

"So far, people have been coming out of the woodwork to help us and we've raised over £20,000," she said.

The community support for Tyler G's Legacy was evident last weekend as the Slade Green Railway Club held a 12 hour fundraiser in aid of the newfound charity.

More information on Tyler G's Legacy can be found here.