'Young and fit' Aussie dad shattered after being given six months to live
The form of motor neuron disease will impact the father's ability to use his arms and legs, and eventually, he'll be left in a state of complete paralysis.
A "young and fit" Australian father-of-two, who earlier this year had been training to run a marathon, has been given just six months to live after he was diagnosed with a devastating, incurable motor neurone disease.
Gold Coast resident Ronald "Hobbo" Hobden, 35, was in the prime of his life prior to his diagnosis in June, before receiving the crushing news he had developed Progressive Bulbar Palsy (MND – PBP) — "a brutal disease with no current cure" that initially impacts the muscles used for speech and swallowing.
Mr Hobden, a father to three-year-old Lizzie and Henry, one, now has to grapple with his rapidly deteriorating health and face the reality of leaving behind his children with his partner of almost 17 years, wife Anna-Louise.
Symptoms already present
Just months since he was diagnosed, Mr Hobden has begun already to experience some significant impacts. His speech has begun to waver and the father already finds it "difficult to project his voice". He now relies on a voice amplifier when in noisy environments and has "also started losing his balance and strength in his left arm as the muscle atrophy starts."
The disease will in time impact Mr Hobden's ability to use his arms and legs, and eventually, he'll be left in a state of complete paralysis, unable to move without help. The Queenslander will need to be fed through a percutaneous endoscopic gastrostomy (PEG) tube and will require complex, intensive full-time care.
Cruelly, Mr Hobden will not lose his other senses, meaning he will be "cognitively clear and will be completely aware of his deterioration and inability to play with Lizzie and Henry, and to hug Anna-Louise".
Early medical bills already in excess of $150,000
With medical bills already mounting in excess of $150,000, the family say they're now working toward spending as much time together as possible, while Mr Hobden still has the ability.
A friend organising a fundraiser page to cover Mr Hobden's medical expenses said there is some small hope on the horizon. In Japan, a drug is being trialled that has shown promising results in extending the life expectancy of people with MND—PBP.
"This drug has shown great results in slowing down the progression of MND in patients who have been diagnosed early, which fortunately is the case for Hobbo," the friend wrote.
"It is not yet available in Australia and to get access to the drug the family need to travel to Japan for three weeks to check Hobbo’s suitability and start the treatment. He will also need to be monitored for several weeks for any side effects.
"The drug costs about $5,000 per month and they will look to bring a 6 month supply home to Australia.
"For Anna-Louise, she is losing the love of her life and her devoted life partner. She adores Hobbo. They have essentially grown up together, sharing 16.5 years of love, happiness, and adventures. The thought of one of them without the other seems unimaginable to all of us."
Mr Hobden's diagnosis has resonated with many, with more than $200,000 already raised through his GoFundMe page.
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