Macarthur rallies behind Rylan Hallworth who has Metachromatic Leukadystrophy

The community is rallying behind a close-knit family given the devastating news their son, a once healthy active and affectionate youngster, will lose all cognitive function by the end of the year.

A southwest Sydney community is rallying behind a local family after the news a five-year-old boy had been diagnosed with Metachromatic Leudagystrophy, meaning his health is rapidly declining.

Tahmoor’s Rylan Hallworth was born perfectly healthy, reaching all milestones and was a smart, loving, affectionate boy.

Signs began in October last year, with Rylan showing behavioural changes such as aggressive outbursts, becoming easily frustrated and physical changes where his right foot would turn out.

Before his diagnosis Rylan Hallworth was a happy, bubbly five-year-old boy.

He now has the cognitive function of a two-year-old.

Rylan’s parents, Natasha and Trent, decided to get tests done and after multiple hospital stays, several doctors appointments and months of watching their son’s health decline, the five-year-old was diagnosed with metachromatic leukadystrophy.

It is a rare genetic disorder that causes fatty substances to build up in cells, particularly the brain and spinal cord.

Close family friend Brooke Flanagan told the Macarthur Chronicle it was heartbreaking to see what the family had been going through.

“Natasha is really shy and not the type to ask anything of anybody … she’s so hardworking but they can’t afford anything,” Ms Flanagan said.

“Something needs to be done, they need a whole new van and wheelchair and everything because they’re just trying to enjoy him while they can.”

Ms Flanagan said Rylan’s family have been watching him go from a healthy, active young boy to being unable to walk without assistance, back in nappies, his speech and deteriorated and is now slurring his words.

Rylan Hallworth was diagnosed with Metachromatic Leukadystrophy after first showing signs in October last year.

Doctors have given the family the heartbreaking news his health is only going to get worse as there is nothing more any specialist can do.

“Rylan now has the cognitive function of a two-year-old,” Ms Flanagan said.

Medical professionals predict Rylan will be non-verbal, tube fed and wheelchair bound by the end of the year.

Ms Flanagan has set up a GoFundMe for her friend as the family to purchase the special wheelchair and van to accommodate for Rylan’s needs.

Since it was created at the end of May, the fundraiser has raised more than $22,000.

Rylan’s heartbroken family have been told to spend as much time with him as they can.

In just a few months, his cognitive function has declined so much he can’t walk on his own.

“In addition to the $10,000 wheelchair and car they also need a special chair for just sitting at home, which costs anywhere from $2500,” Ms Flanagan said.

“What I ask is to imagine being told your once-healthy child has a rare and untreatable disease and to just enjoy the little time you have left with him.

“This is a parent’s worst nightmare.”

Metachromatic leukodystrophy (MLD) is a rare hereditary disease characterised by accumulation of fats called sulfatises.

Ms Flanagan said Rylan’s parents need to be home with him as much as possible but it’s almost impossible to do as they both work full time to provide for their three children.

“I truly hope we can raise enough money to give them the freedom of staying home with Rylan so he can have the best life possible while he is still coherent and aware of his surroundings,” she said.