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, prompted Ms Garrett to scour the world to find an effective treatment. As a result 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 her MS progressing.
HSCT is only offered in Australia via 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.
After a workplace accident left her partner Lance with post traumatic stress disorder and unable to work, Ms Garrett is the family breadwinner.
“That’s put a lot of pressure on me 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.
“And 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.”
Ms Garrett first heard about HSCT soon after Kleo was born, but with dreams of having another child she put it off and Nixon was born.
Over the years she has trialled all of the available treatments for MS, but found the side effects of each drug outweighed the benefits to her daily life.
The “most tolerable” drug 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.
She decided to book the HSCT treatment in Russia after seeing a friend’s results.
“Within six months of being diagnosed, Natasha 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 causing 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 using chemotherapy, then uses blood and immune stem cells from the bone marrow to reset the immune system. Although considered intensive and relatively high risk, the Moscow clinic boasts an 86 per cent success rate in stopping the disease’s progression.
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.
After a battery of tests, two MRIs returned abnormal results which indicated MS, but another attack several months later confirmed the diagnosis and revealed a lesion on her spine which left the neurologist surprised she was still functioning.
“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 depending on her recovery.