A Clyde North man whose family was struck by tragedy is raising funds for life-changing treatments.
Maurice Browne lost his wife and son to Huntington’s disease a mere seven years apart.
His daughter, who also has Huntington’s, is worsening by the day.
“She can’t do anything now,” Mr Browne said.
Now he watches as the disease takes hold of his grandchildren.
Mr Browne’s grandson Phillip now lives in a nursing home, though he is only 34 years old.
His other grandson Mitchell, 31, is also afflicted.
“They did trials on Mitchell but they didn’t help him.
“His movements are absolutely terrible.”
Mr Brown holds annual fundraisers, with money raised going to support research, which Mr Browne hopes will one day lead to a cure.
This year’s fundraiser will be held at Selandra Rise Retirement Village on Friday 26 May at 2.30pm.
This is during the awareness week for the disease.
“We’re going to have raffles, then we will be auctioning off items.
“Hopefully we can get more people to donate items.”
Mr Browne says the fundraiser usually raises around $3000 each year.
This year, the event will feature guest speaker Sally Ferguson, whose family has also battled the disease.
Mr Browne says the disease doesn’t discriminate, even the best people, like his son, can lose their lives to it.
“What people achieve in their life doesn’t make them any more important when they pass away,” he said.
“My son was a teacher and he wrote plays, he would act in them and write the music for them. He just did everything.
“Everything he touched turned to gold, that’s what makes it so hard.”
He says money for research is crucial to finding new treatments, but fears Huntington’s disease doesn’t make the cut.
“Huntington’s is halfway between rare and not rare,” he said.
“If you’re going to have a disease, have a popular one.”
Huntington’s disease results from a faulty gene responsible for nerve cells functioning correctly.
It is a fatal genetic condition.
The earlier the onset of symptoms, the shorter a victim’s lifespan will be.
The disease results in brain cell death.
Affected functions include motor control, coordination, cognition, personality and emotions.
Onset generally occurs between the ages of 20 and 60 years.
Each child of a parent with the faulty gene has a 50 per cent risk factor of inheriting the disease.
Currently there is no cure and minimal medical interventions to manage the condition.
To donate, contact Maurice Browne on 5991 5526.
All money raised will go towards Huntington’s Victoria.
