Love and other drugs: Family’s extraordinary journey to help Sam Goddard recover from strokes – ABC Online

Updated June 12, 2017 14:36:29

A series of catastrophic strokes at 23 left Sam Goddard unable to talk, walk or see.

Doctors thought he had suffered irreversible brain damage but Sam knew exactly what was going on he was just unable to express himself.

Luckily for him, his family and fiance refused to accept the bleak medical assessment and for the past seven years have fought to help release him from his trapped state.

Defying medical advice, they have experimented with different drugs and flown overseas for treatments not approved in Australia.

The results have been nothing short of spectacular.

On Valentine's Day 2010, Sam was living large. He was enjoying work as a young accountant, partying hard and just weeks away from getting married.

He had been out for drinks the night before and, in the sweltering heat, played soccer at a Brisbane corporate charity event.

At midday, he came off the field with a headache after heading in a goal.

By 2:00pm, he was screaming and rocking back and forth in agony.

By 3:00pm, emergency room doctors doubted he would survive the next 24 hours.

Sam had suffered two massive strokes, which the family believes could be linked to his cystic fibrosis.

His father John Goddard said dehydration had caused a "grenade to go off in his brain".

"They said all the intellectual cortexes of his brain were totally white, what they call infarcts, which is total damage," Mr Goddard said.

"The prognosis was that he wouldn't live but if he did, he would be a vegetable."

But Sam's then-fiance, Sally Nielsen, remained relentlessly positive, believing that despite the devastating prognosis, Sam was still there.

"The doctors continuously told us that he'd be brain damaged and said he'd never walk, he'd never breathe on his own and I challenged it every step of the way," Ms Nielsen said.

And so began a journey to scour the world, via "Doctor Google", in search of a miracle.

The first stop was the controversial sleeping medication Stilnox.

The Goddard family came across anecdotal evidence overseas that Stilnox helped brain-damaged people wake up.

Mr Goddard said doctors in Brisbane had a very negative view.

"They just couldn't see it helping Sam and there's no doubt they were also a little bit risk averse too," he said.

Ignoring the advice, the Goddards began administering Stilnox to Sam in 2011, a year after his strokes.

Ms Nielsen said the response was "amazing".

"For about 15 or 20 minutes I was watching him and slowly his face just started to relax [and] the biggest smile I've seen since he's been sick," she said.

"And then he just started joining in our conversation."

Sam told Australian Story in 2011 that he had been fully aware but unable to speak.

"For 15 months I was trapped in my body. I could not communicate verbally at all and now I can. It's a miracle," he said.

It was one of the best responses to Stilnox ever documented.

But the extraordinary effect on Sam's speech lasted only an hour before the drug wore off.

It was harrowing for the family to watch him retreat back into himself, to the state he described as a "dark place".

The director of Intensive Care at the Royal Brisbane and Women's Hospital, Jeffrey Lipman, said the effect of Stilnox on brain injury was still in the experimental stage.

"It's fantastic Sam has responded to it, and not for a minute would I suggest Sam does or doesn't take it I'm not a neurologist but it is not in the domain of evidence-based practice yet," Professor Lipman said.

As the months went by, the effects of Stilnox lessened as Sam's body became used to the drug.

It still brought him out of his locked-in state but his speech lost its clarity.

The second breakthrough came via an unexpected turn of events.

One day in 2012, Mr Goddard suddenly heard his son speaking clearly again.

"Sam called his brother in Adelaide and he thought he was talking to our oldest son because his speech was so clear," Mr Goddard said.

The reason? Cannabis. Sam had just smoked a joint with a friend.

"I was a bit horrified at first but then I looked at the effect it had on him," Mr Goddard said.

There began a long, frustrating and ultimately unsuccessful battle to import a cannabis-based drug called Sativex from the UK, which is used for treating multiple sclerosis.

"We worked hard to get TGA [Therapeutic Goods Administration] approval for Sam to get the drug but then were stonewalled bringing it into Australia," Mr Goddard said.

"We therefore chose to turn a blind eye to Sam's friends giving him occasional joints."

The third major step in Sam's journey came in 2014, after the family watched a television program about an American woman who recovered from a stroke after being administered a drug called Etanercept that was used to treat arthritis.

Sam's father said it was "gobsmacking".

"We started to dream some of those impossible dreams again because you cannot help yourself in that situation when you see something happening that's miraculous," Mr Goddard said.

The treatment is not approved in Australia, so 10 days later Sam flew to Los Angeles with his mother and fiance for a series of injections.

The miracle was not to be Sam only made small gains and fell into a deep depression.

Ms Nielsen said the disappointment led to the breakdown of their engagement, four years after Sam had his strokes.

"I was his carer more than his equal partner, which had frustrations for both of us," Ms Nielsen said.

"The situation meant we couldn't be together but we still love each other incredibly and I think that will always be there."

She and Sam are now "best friends" and Ms Nielsen continues to visit him weekly.

A year down the track, the Etanercept treatment kicked in and, in combination with Stilnox and cannabis, Mr Goddard said Sam now had the power of speech, albeit more slurred, for most of the day.

But a year ago, Sam's cystic fibrosis began to catch up with him.

His lungs are failing, and his older brother Josh has stepped up as Sam's main carer.

"I'll swear and carry on like a pork chop and I'll make him have a great time because he ain't got much time left and I want him to feel as much joy as he can for the time that he has," Josh Goddard said.

Sam's father acknowledged the seven-year journey had been tough and frustrating but said it had also been a joy.

"Yes there have been ups and downs but the ups have definitely exceeded the downs," Mr Goddard said.

"What if he hadn't got back his speech? I wouldn't have missed any bit of this journey."

Watch Australian Story's 'I Am Sam' 8:00pm on ABC TV.

Topics: health, carers, family-and-children, stroke, medical-procedures, human-interest, brisbane-4000, australia

First posted June 12, 2017 05:08:57

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Love and other drugs: Family's extraordinary journey to help Sam Goddard recover from strokes - ABC Online