Erik and Mal Monteith who own Lakes Entrance café – Funkey Monkey – knew something wasn’t quite right shortly after their third son, Arlo, was born.
Mrs Monteith noticed that Arlo, aka ‘George’ couldn’t sit at eight months old and “was in pain”.
As time went on she also noticed expressive language delay.
Trying to get answers, Mrs Monteith saw “many different medical professionals” but was getting nowhere.
Many told her there was nothing wrong with Arlo, “he’s fine,” and would send her home.
But her instinct, not to mention observations, knew better.
Desperately, she tried to make an appointment for Arlo to see a paediatrician in Sale, but was informed there was a two-year waiting list.
It wasn’t until Arlo contracted a respiratory infection, for the second time in his young life, that he was flown to Monash and a team of doctors focused their attention on what was wrong.
They discovered little Arlo was suffering from a rare neurodegenerative disease called ‘Hereditary Spastic Paraparesis’, or HSP.
HSP progressively causes spasticity and weakness in the legs, which could render Arlo unable to walk.
At the moment, the happy-go-lucky four-year-old manages to walk with the assistance of a walker.
“As soon as the doctors gave it to him, he just took off,” Mrs Monteith told the Post.
Arlo is now under the care of Royal Children’s Hospital movement disorders clinic and regularly attends appointments in Melbourne.
Mrs Monteith says she was told by the hospital that there’s very little research done into the rare, genetic disease because of a lack of funding.
“They’ve got things they want to try, but without funding they’re years and years behind,” she said.
That gave the Monteiths the idea to hold a fundraiser at the café on Arlo’s fourth birthday on Saturday, May 22.
All funds raised on the day will go toward funding HSP research.
Mr Monteith says with the support of his two loving brothers, Olliver, 10, and Isaak, 8, Arlo appears to take HSP in his stride.
He loves to attend kindergarten and is popular with the other children.
“The community has been really great,” Mrs Monteith said.
“He charms everyone at the café and loves to make jokes.”
However, Mrs Monteith said there was a lot of pain management associated with Arlo’s diagnosis and the couple was busy juggling work in the café’ with his numerous appointments.
Each week Arlo has a physio appointment in Sale and speech pathology in Bairnsdale.
The Monteiths concede the future for Arlo is still unknown, but the couple is keen to gain as much information as they can about the condition in the hope of giving their son a bright future.
They also hope that further research into the degenerative disease will help other families who may also be looking for answers.
Funkey Monkey is located in Myer Street, Lakes Entrance for those wishing to attend the fundraiser this Saturday.

IMAGE: Erik and Mal Monteith with Arlo aka ‘George’, who suffers from Hereditary Spastic Paraparesis, or HSP, pictured in Lakes Entrance last week. K137-738