Drug breakthrough gives hope for a better life
WHEN Jonah Ford was born, he was given a life expectancy of 36 years.
But new treatments for cystic fibrosis have become available, paving the way for hope for his family and many fighting the same battles.
Every day until treatment comes, he will have to swallow a collection of medications and undertake an hour of physiotherapy... on his good days.
On the bad days, he could be in hospital for up to six weeks.
On December 1, Kalydeco, a treatment for a specific gene mutation of cystic fibrosis will become available to certain sufferers.
Even though little Jonah will not benefit, it is still reassuring news for parents Sarah and Morgan Ford.
"Kalydeco on its own can not help Jonah, but there is a drug currently being trialled in the US called Lumocafter.
"If administered with Kalydeco, it will treat Jonah's mutation," she said.
"He is only five-years-old. It's incredibly likely that he could have a treatment in five or 10 years."
Two days after he was born, bowel complications led to Jonah's diagnosis.
Cystic fibrosis is described by mother Sarah as a disease that "thickens secretions in the body".
Most significant to Jonah's case is the thick mucus that develops in his lungs, making it difficult to swallow and breathe.
It means he has already spent more time in hospital than most middle-aged adults.
Despite this, it is impossible to see symptoms in the little boy when he is well.
He is an active, inquisitive and bubbly little boy in his mother's eyes.
"Our main wish as his parents is to make sure cystic fibrosis doesn't rule the way he lives," she said.
"He has always been one to keep us on our toes. He has a wicked sense of humour and is an amazing, amazing little boy."
Currently in prep at St John's School and embarking on the overseas trip of a lifetime in one month, it's a far cry from the early years following diagnosis.
"I used to be afraid of taking him to the shopping centre," she said.
"You never know who has been sick and where they've put their hands."