Kyllie Garrett doesn’t want her children Kleo, 4, and Nixon, 2, to remember her as a mum that couldn’t do the things they wanted to do.
The 35-year-old Delacombe finance expert has multiple sclerosis and its effects – numbness, muscle weakness, muscle spasms, vertigo, nerve pain and coordination issues – are debilitating.
The devastating impact on her life, and that of her family, has prompted Ms Garrett to scour the world to find an effective treatment after available treatments failed her.
She has been offered a place in a Russian stem cell therapy clinic next year, but it comes at a cost of more than $100,000.
Ms Garrett hopes an autologous haematopoietic stem cell transplant, or HSCT, will reset her immune system and stop the progression of MS.
It is only offered in Australia in a clinical trial which Ms Garrett won’t qualify for because she is not disabled enough. But she can’t afford to allow the disease to further ravage her body.
“My kids are so young. It would be nice to know that I don’t have to explain why mummy can’t do certain things with them.”Kyllie Garrett
After her partner Lance suffered a workplace accident that left him with post traumatic stress disorder and unable to work, Ms Garrett is the family breadwinner.
“That’s put a lot of pressure on me long term to be able to continue to work,” she said.
“I figure if I can extend my working life by 15 years it’s money well spent and if it’s going to get my kids through to 18 and being independent, then that’s a good benefit.
Statistics show most MS sufferers either stop work or reduce their hours to almost nil within 10 years of diagnosis.
Ms Garrett heard about HSCT treatment several years ago when Queensland nurse Kristy Cruise told of her HSCT success on a national current affairs program, and began looking at it more seriously soon after Kleo was born. But with dreams of having another child, she put it off and Nixon was born.
Over the years Ms Garrett has tried most of the different treatments available for MS, from injecting herself every second day to tablet therapies, but found the side effects of each drug outweighed the benefits to her daily life.
The “most tolerable” drug was only 25 to 30 per cent effective but would bind up her muscles causing intensive stiffness and pain. One of the injections could cause her chest to constrict so much she thought she was going to die.
“I’d been pretty good up until December when I had another MS attack and now I’ve got really bad vertigo, dizziness and constant nausea which is stopping me from doing a lot of things,” she said.
“It’s so hard to explain to the kids why I can’t do stuff, and I don’t want to burden them or my family for any longer.”
She decided to book in for treatment in Russia after seeing a friend’s results from HSCT treatment.
“Natasha is very similar to me with two small children. Within six months of being diagnosed she had 76 lesions on her brain and she had to stop working and get a carer. She had HSCT and almost 12 months out she has had no new lesions.”
Multiple sclerosis is an immune-based disease that causes lesions to form in the central nervous system that interfere with nerve impulses within the brain, spinal cord and optic nerves.
HSCT destroys the patient’s immune system then uses blood and immune stem cells from the bone marrow to reset the immune system following chemotherapy. Although considered intensive and relatively high risk, the Moscow clinic boasts an 86 per cent success rate in stopping the progression of the disease.
Ms Garrett was first diagnosed with MS about six years ago aged 29. She collapsed and had a seizure in the shower, and from then on suffered dizziness, confusion, memory issues, slurred speech and severe fatigue.
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“Because I had been playing women’s footy, when I saw a neurologist they thought I had late onset concussion but I didn’t remember having a head knock,” she said.
After a battery of tests, two MRIs returned abnormal results which indicated MS, but another attack several months later confirmed the diagnosis.
Tests revealed a massive lesion on her spine, which left the neurologist surprised she was still functioning or even walking.
“It’s on the base of my skull on my neck and causes sensory issues, numbness, tingling, nerve pain and muscle weakness,” she said.
Ms Garrett last month launched a gofundme page to help raise $100,000 to cover her flights and treatment in Russia, which is expected to take about 35 days or longer depending on her recovery.
She is also applying for a federal government grant under the Medical Treatment Overseas Program for treatment that can’t be available in Australia in time to be of benefit to a patient. But with only nine grants made last year she’s not hopeful.
Despite her workload of juggling ill health, family life, work and volunteering with her beloved Melton Centrals Women’s Football Team, Ms Garrett has also managed to raise more than $15,000 for the Kiss Goodbye to MS campaign – including recently having her head shaved which raised $6000.