When Jonathon was just a few months old, his mother, Megan Beit, learned that her son would not live until his first birthday.
Doctors had just discovered he had a devastating genetic condition, which robs children of their ability to walk, breathe and swallow – and ultimately, usually takes their lives after just a few years.
But then Jon took a dose of the most expensive drug in the world.
And he’s not only alive, two and a half years old, but learning to walk.
“When you’re told your child will never walk and they’re in a frame and moving their legs, it’s unbelievable,” Ms Beit said.
“If you looked at him 12 months ago, you wouldn’t think he was the same kid.”
Jon suffers from a condition called Spinal Muscular Atrophy (SMA).
There are three types and type one, which it has, is the most serious.
It affects the nerves in the spinal cord, which control all muscle movement in the body.
Diagnosis shock after worries
After he was born in late 2019, Ms Beit, from Bywong near Canberra, said something was different compared to when she had her other children, Lily, 14, and Imogen, 12.
“He didn’t raise his head, he let out a weak cry and a bit of a cough – we were laughing at that without knowing it,” she said.
“I could feel something was wrong.”
At first, Ms Beit, a teacher, was rejected by doctors, with a nurse telling her “all babies are different”.
Jon’s regular three-month check-up was canceled by the COVID-19 outbreak.
It wasn’t until she insisted on seeing her GP in person and was referred to a pediatrician that the doctors realized something was wrong.
“I knew it was serious…my husband was waiting in the car with the girls, and she said, ‘Is he there? You have to call him,'” she said.
She was told her son had SMA, a type of motor neurone disease, and needed to be taken to Randwick Children’s Hospital in Sydney immediately.
“I think I was just crying,” she said.
The family, including her husband Andrew, 45, have been warned not to Google the disease – even if they’ve never heard of it.
Doctors said Ms. Beit Jon’s life would likely be very short if nothing was done.
“He said without treatment he probably wouldn’t have his first birthday,” she said.
“I couldn’t believe it. I just said, ‘Do whatever you can do’. It was awful.”
There is no cure for the disease – but new drugs available in recent years have offered dramatic improvements.
The latest drug, called Zolgensma, costs $2.5 million, making it the most expensive in the world.
The doctors asked the Beit family to have him for treatment abroad, which would have cost them nothing.
But they were not allowed to travel to Chicago in the United States due to the COVID-19 travel ban.
Instead, Ms Beit said the Australian government funded him in Sydney.
Jon received the precious dose via an infusion in October 2020, when he was nine months old.
And even though there were side effects, once he got over them, he started to progress like never before.
“He achieved goals and excelled beyond what we thought was possible,” Ms Beit said.
This includes taking their first steps in the last few weeks, with the help of a walker.
However, he still cannot eat, as he cannot swallow properly and he cannot speak.
He uses an iPad to communicate – which he excels at, says his mother.
“Intellectually, he’s very smart,” she said.
“He loves animals – he will come and feed the chickens.
“Aside from the physical disabilities, he’s such a normal toddler – he’ll even have temper tantrums.
His mom hopes he can go to normal school in a few years.
The hope of a “classroom” of children
Meanwhile, other families can now get the same drug for just over $40, after it was enrolled in the Pharmaceutical Benefits Scheme (PBS) in last month’s Budget.
Prime Minister Scott Morrison has said the ‘miracle drug’ will save a ‘classroom’ of children each year – around 30 babies are born with SMA each year in Australia.
“This is going to provide life-changing and life-saving treatment for many Australians who don’t even know they will need it yet,” he said.
Julie Cini of the charity SMA Australia, which campaigned for the drug after losing two children to the disease, said the funding was “transformative”.
The Ministry of Health has confirmed that Zolgensma will be listed on the PBS from May 1 for the treatment of spinal muscular atrophy.
“The list is expected to benefit approximately 20 patients each year. Without PBS funding, the treatment could cost upwards of $2.5 million,” a spokeswoman said.
“Under PBS, the cost will be $42.50, or $6.80 for eligible patients with a concession card.”
From November 1, the government will also fund pre-pregnancy genetic testing for SMA and two other genetic conditions.
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