Melody Holmes is hoping her Givealittle crowd funding page will help towards the $100,000 cost of getting stem cell treatment in Russia.
“For someone staring into the darkness of a future of pain and disability, that’s an amazing light of hope,” writes Melody Holmes on her Givealittle crowd funding page.
She’s talking about the chance to go to Russia in July for stem cell replacement treatment to halt her worsening multiple sclerosis.
She’s married, 42, and a mum to three kids aged 10 and under.
She explains how the disease hit a decade ago and how it has affected her life since.
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“Without treatment, there will come a time when I will no longer be able to walk or drive and that prospect is terrifying,” she writes.
But unfortunately her story is far from unique. Currently live on the site are at least 12 other people seeking donations to help them go overseas for stem cell treatment.
Natasha Mussen, 45, has had MS since she was 24 and and also wants to go to Russia for treatment. Her symptoms are worsening. “I can now only stand up for 15 minutes at a time before I get tired. I have to spend my energy wisely, as a task as simple as hanging the washing on the line can completely drain me.”
Briar Novis, 43, says she is taking medication daily to slow her MS relapses but she is slowly deteriorating. “I am permanently tired and fatigued and use a walker and crutch to get around as my balance is badly affected.”
Faye Braddock and son Jesse. She says her stem cell treatment in Russia last year has transformed her life.
Most of the fundraisers are heading to Russia, but others want to go to Mexico and Singapore. About $100,000 is the usual amount sought.
New Zealand doesn’t carry out hematopoietic stem cell therapy (HSCT) for multiple sclerosis (although many stem cell treatments are done for blood cancer) and doesn’t fund the treatment.
Multiple sclerosis is a disease where the immune system plays up and attacks its own body. In this case, it is the myelin sheath around nerves.
In HSCT, stem cells are taken from the blood, chemotherapy wipes out immune cells, then the purified stem cells are reintroduced to rebuild the immune system, which has hopefully lost the urge to attack the body.
Multiple Sclerosis NZ vice president Neil Woodhams said many people turning to overseas clinics wouldn’t need to if New Zealand wasn’t so restricted in its use and funding of disease modifying treatment drugs (DMT).
“We absolutely say before people go overseas they should try the disease modifying treatments first. Only if they are not working should they go.
“MS has been portrayed as a disease with no known cause and no known cure, which was probably the case 20 years ago. But we know MS is caused by the body’s auto immune system attacking the myelin sheath around nerves and we know we have drugs which will delay or stop progression, so it’s not a death sentence that people might have seen years ago.
“I’m not sure that message has got through to the general population,” he said.
Woodhams said stem cell treatment could only halt the disease. It couldn’t undo damage already done.
He said people should check out a clinic carefully, including talking to independent experts about its credibility. Clinics varied on how hard “they blitzed” the immune cells, and it was important to choose one that used your own stem cells rather than another person’s cells, which created rejection problems.
Last year MS New Zealand brought leading European expert Dr Riccardo Saccardi to New Zealand to present evidence around stem cell treatment. Saccardi had treated more than a 1000 MS sufferers in his Florence clinic.
Saccardi’s advice was HSCT was worth trying only in certain circumstances, including that at least two disease modifying treatment (DMT) drugs had been tried and failed; the victim was continuing to get remissions and relapses, and the victim was preferably under 45 but not over 65.
Woodhams said success was not guaranteed.
“I am aware of individuals who have gone and come back and say it was miraculous. And others who have gone and come back and it hasn’t worked for them. I know of another person who went and had very good results for a couple of years and now the scans show the lesions are returning.”
Against her neurologist’s advice, she travelled to Russia for stem cell treatment in May last year,
Braddock said her neurologist told her to try DMTs and said her level of disability wasn’t high and so the risks of the treatment outweighed the benefits.
“Those words hung in my mind the whole the whole time. But I went to see her a couple of months ago and she said ‘oh my goodness you made the right choice’. So she kind of retracted what she said.”
Braddock said her main problems had been extreme fatigue, limping and being unable to walk much farther than 500m, and difficulty thinking clearly and remembering things.
She still had some symptoms, but those main ones had gone.
Braddock said the HSCT stopped the disease and it appeared the nerve damage wasn’t too serious to stop her body healing itself.
The clinic and treatment cost about $75,000 and other costs were another $15,000.
Through fundraising by friends and family, and through crowd funding sites like Givealittle and Pledge Me, here and overseas, Braddock was able to raise about $65,000 and covered the rest by adding it to her mortgage.
“I left my pride at the door and I just put myself out there because I thought it was my one chance to get my life back,” she said.
“I’ve got two little children and if I hadn’t done this, I would have been in a wheelchair in a couple of years.”
Braddock said it was embarrassing to ask publicly for money.
“I was feeling so ashamed and cried virtually every day.”
But then a work colleague told her she was giving people a chance to help her and they would feel good about it, not bad.
“When I looked at it like that, I felt very different.”