Martin Hellegers is in the fight of his life.
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The 52-year-old father and grandfather has cavernous hemangiomas (cavernomas), a very rare condition which causes clusters of abnormal blood vessels to grow and bleed on his brain.
One in particular is the size of a walnut – 2.4 centimetres – and located in his thalamus, putting pressure on his brain stem.
With the distortion, Martin is “heading for a major stroke”, wife Sharon told the Daily Liberal. A stroke which, if he survived, could result in paralysis or a coma – all within the next 12 months.
But a high-risk craniotomy to remove the cavernoma near his brain stem – and another causing seizures in his left temporal lobe – could improve his daily life, and prolong it.
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“Basically, his time is very short at the moment,” daughter Tammi Helleger said.
“We’re just grasping at straws to get him more time to be with family.”
That family includes four children, and nine grandchildren under 10 years of age.
“That’s the biggest thing: we want him around to see our lives, and he wants to enjoy that.”
Martin’s road has been a long one.
He was first diagnosed in 2001, when he suffered a grand mal seizure “out of the blue”.
“We were just young farmers with a young family just out of Mendooran,” Sharon said.
“He had a headache, he collapsed and had a grand mal seizure … they discovered he had nine of these cavernomas and we were told not to put anything off.”
Due to their locations, the cavernomas were declared inoperable.
Martin was no longer able to work, and he and wife Sharon were forced to give up their farm.
He now has 26 cavernomas, through “every single section of his brain”.
A hemorrhagic stroke in 2015 left him with chronic nerve pain and other deficits in 50 per cent of his body. Martin suffers with nosebleeds and constant headaches, and takes pain medication and anticonvulsants daily.
As if that wasn’t enough, Martin and Sharon’s 16-year-old son suffered a heart attack in November, and has since been diagnosed with acute myocarditis.
“So that was just the icing on the cake,” Sharon said. “But he’s okay.”
The possibility of removing the worst of Martin’s cavernomas is giving the family hope.
The only barrier; the price tag. Even with private cover they’re looking at $50,000, plus Martin’s rehabilitation and ongoing medical costs.
To help, Tammi has launched a gofundme page – au.gofundme.com/help-martin-battle-brain-cavernomas – which has already raised close to $7000.
“Thank you anyone who has donated, because it gives us hope,” Tammi said.
“The whole family would be so so grateful for anyone that can donate or even share.
“We’re very grateful, because it seems out of reach at the moment.”
“We’ve been on this journey feeling very alone for 17 years,” Sharon said. “It’s very encouraging and nice to know that people do care.”
