Matt Taylor's multiple sclerosis has been halted in its tracks and he's not about to squander his new-found freedom from its clutches.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
The 40-year-old Bemboka man returned from Moscow in mid-July following autologous hematopoietic stem cell transplantation surgery, where his body was given a new immune system.
Following three months recovering in isolation at home to allow the new immune system to rebuild he was shopping in Bega this week and stopped by the Bega District News for a catch-up.
"I feel good, my bloods are good...and my hair's growing back!" he said with a grin, looking incredibly healthy for a young man who only short months ago was staring down a potential future in a wheelchair and the loss of his sight.
"It's definitely been an experience and a half.
"The last bit of isolation was particularly hard mentally. It was serious cabin fever - there's only so many movies you can watch."
AHSCT is not available in Australia, with Mr Taylor one of several Bega Valley residents to have undergone the trip to Moscow in recent years for the surgery.
Now back on his feet, Mr Taylor said he is "going to keep pushing buttons" to have Australian health authorities look more closely at implementing it here.
He said while at the AA Maximov Hospital in Moscow, he met fellow patients from around the world who had travelled to see Dr Denis Fedorenko for AHSCT.
"We were like the United Nations of MS - they were from the US, Denmark, all over the place and it was interesting to talk to them and hear they were experiencing the same frustrations as us.
"MS is looked at here [in Australia] as a neurological condition. There [in Russia] it's treated as a haemotology issue, a blood issue.
"As a collective, all the countries not doing this surgery look at it as a brain issue. Yes that's where the lesions show, but that's really the side effect. The cause is the immune system."
Mr Taylor said AHSCT doesn't reverse any problems arising from MS, but it does stop it in its tracks.
"Essentially the damage is done, but if you get it early you can limit the progression.
"I felt blessed because I got treated early. The advice I was given once was 'you're not bad enough yet'. But would they say the same for cancer?"
He said at the same time he was in Moscow there was a 30-year-old man blind and wheelchair-bound.
"This will stop it, but what's their quality of life going to be - on them and their family?
"And there was a 35-year-old woman who was looking at life in a nursing home within 4-5 years, which would be a financial burden on the government as well.
"Maybe the tablets will work for some people, but at least give us the option. It breaks your heart if the treatment is not working.
"At least open the conversation and ask why we can't have it done in Australia. Times have changed, things change."
Mr Taylor wasn't expecting the campaign to be easy, but likely nothing to what he's already been through.
"It's turning a negative into a positive - that's the bottom line isn't it."
'Nearly brought me to tears'
Matt Taylor said the support he has received from the community has been incredible and at times brought him close to tears.
The Candelo-Bemboka United ladies league players have been wearing special jerseys highlighting multiple sclerosis sufferers in the Group 16 Nines competition.
Mr Taylor said when the club's show of solidarity was brought to his attention, "it was pretty special, it made me cry".
He travelled to Narooma at the weekend to watch them play and to thank them personally.
Candelo-Bemboka United made the grand finals and Mr Taylor said at this weekend's games in Tathra they will be presenting him with one of the special jerseys for which he was very grateful.
He said the support from the wider community has also been overwhelming.