‘Fit and healthy’ 35-year-old father has just six months to live after contracting ‘brutal and incurable illness’
A fit and healthy father of two has just six months to live after developing a cruel illness with no cure.
Ronald “Hobbo” Hobden, 35, was a week away from running a marathon when he was diagnosed with bulbar-onset amyotrophic lateral sclerosis (MND-BALS) in June.
The Gold Coast local now reflects on the grim reality that he will have to leave behind his wife Anna-Louise and their two children, Lizzie, three, and Henry, one.
Mr Hobden had experienced symptoms of the illness in the months before his diagnosis.
His speech is hesitant, with the father having to rely on a voice amplifier to speak in noisy environments or in crowds.
Ronald ‘Hobbo’ Hobden (pictured second from left with his family) was a week away from running a marathon when he was diagnosed with bulbar-onset amyotrophic lateral sclerosis.
His body is deteriorating, with loss of strength, movement and balance. He also has difficulty holding his children.
Bulbar-onset amyotrophic lateral sclerosis affects motor neurons in the bulbar region of the brainstem, leading to difficulty breathing, speaking, swallowing, and moving.
It is the most aggressive form of motor neurone disease and has a life expectancy of 6 months to 3 years.
Mr Hobden is expected to eventually lose function in his limbs before becoming completely paralyzed.
He will then need to be fed through a percutaneous endoscopic gastrostomy (PEG) tube which will require full-time care.
The illness will not affect the father’s other senses, meaning he will be cognitively aware of what is happening as his body deteriorates.
His heartbroken wife described how her husband’s condition turned her life and that of her family upside down.
“It’s just the hardest thing to watch,” she said 7News.
“We are now looking at every possible angle to try to prolong his life as long as possible.”
“We try to be as practical and prepared as possible for our children.”
The illness caused Mr Hobden’s speech and body to deteriorate. He is expected to eventually lose function in his limbs before becoming completely paralyzed (pictured, Mr Hobden with his wife, Anna-Louise)
Mrs Hobden heartbreakingly described her husband’s condition as “the hardest thing to watch”, as friends and family try to prolong his life as much as possible.
A GoFundMe page was set up by family friend Leah Hill to help the Hobdens.
“Making memories for Lizzie and Henry as a family together, including travel, while they can and while Hobbo can,” she wrote.
The next goal was to provide the beloved dad with “access to the best health care” and help cover his exorbitant medical costs.
Ms Hill spoke of an experimental drug tested in Japan and recommended by Mr Hobden’s specialist at the Brain Mind Centre.
The family want to travel to Japan for at least three weeks to check whether Mr Hobden is fit to start treatment.
The experimental drug will cost them about $5,000 a month and the family is looking to bring back a six-month supply to Mr Hobden.
“For Anna-Louise, she loses the love of her life and her devoted life partner. She loves Hobbo,” Ms Hill said.
“They grew up together, sharing 16.5 years of love, happiness and adventure. The idea of one without the other seems unimaginable to all of us.
The GoFundMe page has already raised more than $200,000.
We can find here.
WHAT IS AMYOTROPHIC LATERAL SCLEROSIS?
ALS is an acronym for amyotrophic lateral sclerosis.
It is also called motor neurone disease, or Lou Gehrig’s disease, named after the American baseball player when he was diagnosed in 1939, at just 36 years old.
The disease is a rare condition that gradually damages parts of the nervous system.
This happens when specialized nerve cells in the brain and spinal cord, called motor neurons, stop working properly – called neurodegeneration.
The life expectancy of about half of people with this condition is three years from the start of symptoms.
However, some people can live up to 10 years, and in rarer circumstances even longer.
This disease can affect adults of all ages, including adolescents, although it is extremely rare.
It is usually diagnosed in people over the age of 40, but most people develop their first symptoms in their 60s. It affects slightly more men than women.
There is currently no cure for motor neurone disease.
Treatment aims to enable the person to feel comfortable and have the best possible quality of life.
It also attempts to compensate for the gradual loss of bodily functions such as mobility, communication, swallowing and breathing.