A man who suffered a debilitating and fatal condition that left him unable to chew and spit has told of his life to regret.
Tom Lacy was born with Down Syndrome and was diagnosed at seven.
He said: “I’m lucky I didn’t have that.
It’s a terrible thing to be able to walk, but I’ve done it.
I can go out and do my job and get my teeth cleaned, and I’ve always got to get them in.”
I’ve got to say I was pretty lucky I did.
“But I did, I didn, I have to say.”
Mr Lacy’s life began to spiral in the early 1990s when he was in his early teens.
He was diagnosed with Down syndrome at the age of two, and the condition was initially diagnosed as a rare disease.
He later discovered that he had a rare form of cancer called squamous cell carcinoma of the stomach and colon, which is caused by a mutation of a protein found in the squamous cells of the body.
“It was the first time I’ve ever had a cancer that was really bad, and so it was really hard,” he said.
“They said, ‘Tom’s going to be fine, you’re going to have a tumour’.”
I was just devastated.
I thought, ‘OK, you’ve got this bad news, it’s not going to get better.’
“I didn’t want it to be the end of me, and they said, [it’s] still a very serious disease.”
The cancer is very aggressive and they told me I had a 50 per cent chance of survival, and it’s been going on for about six years.
“At that time I had the most serious and life-threatening symptoms, and that was the most worrying part.”
Mr Muth said his condition left him with a host of physical and mental disabilities, including a condition known as spasticity.
“Tom was the epitome of a child with Down’s syndrome, which means that he was a very special child, and he was the only child in the world with this,” Mr Muth told ABC Radio Adelaide.
“When you have a condition like this where there are things that make you vulnerable to the worst things, the most frightening things, it really made a big difference.”
His condition was so severe that it was almost a curse, and when you have that kind of condition it can be very hard to cope.
“Mr Nair said Mr Lacy would have to live a life of regret.”
My son will have to make his own choices, and there is no way that I’m going to live with that,” he told ABC Adelaide.
The ABC understands Mr Murch is considering legal action against the state and his parents.
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