Stem cell treatment for multiple sclerosis in Mexico last hope for Hunter man

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Pioneer Founding member
By HELEN GREGORY June 5, 2015

http://www.theherald.com.au/story/3128647/stem-cell-treatment-for-ms-in-mexico/

MARCUS Nicholls has lived with multiple sclerosis for almost half of his life, but is now tantalisingly close to what could be a miracle treatment.

‘‘It’s extraordinary,’’ he said of the autologous hematopoietic stem cell transplant (HSCT) treatment, which some claim has halted the progression of MS in 80per cent of people and could reverse disability in 60 to 70per cent of people. It also reportedly has a 1per cent mortality rate.

‘‘It’s offered me hope where there pretty much isn’t hope,’’ he said.

However, the treatment is not easily available in Australia, with MS Australia advising it is an ‘‘aggressive high-risk treatment’’ with mixed outcomes.

Mr Nicholls, 44, will leave his Sawyers Gully home on June 26 with 18-year-old son Jaya as his carer to spend two months in Puebla, Mexico, for the $US49,000 ($63,000) treatment.

‘‘I have not reached the excitement stage yet, I’m still nervous and a bit anxious,’’ he said. ‘‘But I know this is the right thing.’’

Mr Nicholls is in the secondary progressive stage of MS, a disease of the central nervous system that interferes with nerve impulses within the brain, spinal cord and optic nerves.

The drugs he has been prescribed slow the progression of MS for 30 to 50per cent of people, but do not appear to have worked for him. Mr Nicholls learned nine months ago about HSCT, which involves harvesting stem cells from patients and giving them doses of chemotherapy, then replacing the stem cells in the patient’s body.

‘‘I call it being control, alt, deleted,’’ he said. ‘‘It cleans the slate.’’ The treatment is available throughout the world, including Canada, Italy and Singapore. But in Australia, it is offered only at a small clinical trial at St Vincent’s Hospital in Sydney.

At Mr Nicholls’ stage of the disease, his only option was paying for treatment in either Israel in mid 2016 or Russia in mid 2017. The Mexico clinic offered him a June 28 treatment date.

‘‘If I could find a hospital here that was willing to do it then I would have happily paid for it,’’ he said. ‘‘Just to be able to be close to your family would have been worth it.’’

MS Australia said while reports reveal the treatment has shown encouraging clinical findings a lot of work needed to be done to prove its effectiveness and safety for people with MS.

‘‘The outcomes have been mixed and the treatment is still considered experimental by the international research community,’’ MS Australia said on its website.

‘‘As a high-risk, unproven treatment, stem cell therapy is currently only considered by some doctors and hospitals on a case-by-case basis.’’

Mr Nicholls received his official diagnosis of MS in February 2007, but said he believed his first attack can be traced back to when he was 23 and unexpectedly and suddenly lost sight in his right eye for six months.

‘‘I knew a few people who had MS and knew what the picture looked like a little down the line,’’ he said.

‘‘At the end of the day it does kill people and your life span is affected, so it was threatening, no question about it.’’

Mr Nicholls started to slip about 18 months ago into the secondary progressive stage of the disease and his symptoms have worsened.

He has 50per cent vision in his right eye and is numb in both hands and from the waist down. Mr Nicholls gets tired easily, experiences brain fog, has lost the ability to walk long distances and has noticed his sense of balance has deteriorated. He said he has been lucky to have been able to slowly wind down his involvement at his business, Akuna Care, which he operates with wife Ariel.

‘‘Most mornings I put on the uniform to make me feel involved in the process and feel like I have something to keep working and striving towards,’’ he said.

‘‘I’m past ‘Poor me’, I’m now ‘How do I make the most of what I have and continue to feel important and feel like I’m contributing in some shape or form?

‘‘I’ve tried to be confident and happy throughout the process and not let the disability control me.’’

Mr Nicholls had not told many of his friends, any of his staff or any of his customers about his diagnosis until February this year, when he wrote a post about it on Facebook. ‘‘It was like coming out,’’ he said.

The love and support he received was so overwhelming he began recording videos about his progress for a blog. ‘‘It’s about growing,’’ he said. ‘‘Being able to be honest and feeling the support has really made a difference and been extremely rewarding.’’

Mr Nicholls has been determined ever since he learned about HSCT to travel overseas for treatment – and was willing to refinance his mortgage to pay for the trip.

But then his wife suggested a fundraising page.

‘‘I sat on the fence because I felt ‘Was I worthy enough for people to donate money towards?’,’’ he said. ‘‘The response was truly staggering, words can’t comprehend it.’’

Donors have given more than $53,500 for Mr Nicholls’ treatment, airfares, accommodation and insurance. Mrs Nicholls has organised a long lunch fundraiser for her husband on June 8. Tickets are $200 and include food, alcohol, entertainment and a boat trip to Peats Bite on The Hawkesbury River.
 
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