“I get emotional when I talk about my kids. I’ll miss my daughter’s birthday – her 16th – but I have to do this.” – Suzie Kutic
Pakenham woman Suzie Kutic is facing the fight of her life – her battle with Multiple Sclerosis. Later this year, she’ll leave for the Philippines to receive treatment she hopes will stop the disease in its tracks. She recently told RUSSELL BENNETT her story…
THE two most important people in Suzie Kutic’s life are her teenage children. Like many mums, she gets a touch emotional just talking about her kids. But in Suzie’s case, that relationship has been given a new context through her battle with Multiple Sclerosis. She wants to do everything in her power to at least stop the disease progressing long enough to be able to spend plenty more meaningful, quality hours with her kids.
“I got diagnosed nearly six years ago,” she said.
“Everything was fine.
“Multiple Sclerosis (MS) is one of those diseases where it might not affect you for a number of years – everyone is different. You can go 20 years and maybe be a little bit fatigued or show small symptoms, or it could just hit you like a tonne of bricks.”
What started out as a slow and steady rate of progression has – over the past couple of years – accelerated.
“I still work full-time, but I work in Richmond. I can get there and do my job, but when I get home I just fall asleep on the couch. I’m done,” the 40-year-old said.
MS is the most common chronic disease of the central nervous system among young Australians. It’s an incurable disease that can affect the brain, spinal chord and optic nerves.
“I’ve tried a couple of different treatments,” Suzie said.
“With MS they’ve got disease-modifying drugs. There’s no cure, but they can stop it progressing.”
Suzie has had what she describes as two “massive flare-ups”, the last one of which led to her being confined to her home for three weeks, unable to walk properly.
“With MS, your nerves have like a sheath that surrounds them and MS attacks that sheath so it exposes your nerves,” she explained.
“I saw a great photo recently of a phone charger with a frayed cord. My nerves are fraying.”
For Suzie to qualify in Australia for the treatment she hopes will stop the disease in its tracks, her MS needs to be what’s described as “active”.
“You need to have new lesions evident on your MRI,” she said.
“The last time I went and had an MRI my neurologist was almost happy, saying there were no changes or new lesions.
“But then I went into a bit of panic, wondering what’s causing this. Mine is heading into the progressive stage where there aren’t any medications here yet to help.
“There’s lots of research, but as a result that’s why I don’t qualify for the treatment here.
As soon as that happened earlier this year – in early January – in the back of my mind I said to myself I’d go overseas for treatment.”
But there’s a hitch. She needs to raise $150,000 to get over to the Philippines later this year for Hematopoietic Stem Cell Transplantation (HSCT) and the clock is ticking.
“As soon as I walked out of the neurologist’s office I applied everywhere overseas,” she said.
“There are about 10 countries that do it. Some have strict guidelines like we do in Australia, and others are more open because it’s tried and tested and there’ve been great success stories.
“I first heard about it from a woman in Brisbane. She went over to Russia for treatment and took 60 Minutes with her and I remember watching and just having a sense of hope – that there’s something there for me.
“I followed her story for a couple of years, but then I needed to make it about me.
There aren’t any guarantees, but the ultimate goal is to at least just stop it progressing.”
For Suzie, 27 November will be like a new birthday. It’s the date she begins her treatment, and the start of what she hopes will be a new life for her and her kids.
She’ll be in the Philippines for five weeks, where the treatment and accommodation alone will cost close to $100,000.
“I also live in Pakenham on my own with my kids, who I share custody of. I want to try and have as normal a life as possible when I get back without the stress of overheads and things like that,” she said.
“I’m doing this for me – but that includes being there for the kids.
“They’re teenagers so it’s good because I can talk to them. They understand what’s going on.
“I get emotional when I talk about my kids. I’ll miss my daughter’s birthday – her 16th – but I have to do this.”
The HSCT treatment is incredibly invasive – involving the removal of some of her own stem cells, intense chemotherapy to eradicate her immune system, and the re-introduction of those stem cells to build it back up.
“The idea behind it is that they’re rebooting your whole immune system,” Suzie said. “They take out the old one that has all the memory of MS and give you a new one, so you’re pretty much like a newborn baby. That’s where the risk factor lies.”
Suzie has an incredible support around her – her kids, her parents, her sister, and her best friend who will accompany her to the Philippines. With their help, she says she’ll “definitely” make it there.
Her work colleagues at Red Energy have also been incredible – helping raise money at the office to go towards her cause.
In addition to that, there’ll be a gala event in North Melbourne being held Tuesday 21 June and a trivia night on Friday 2 September at the Cardinia Cultural Centre, both to raise money.
This doesn’t sit all that comfortably with Suzie, but she knows she has to put herself out there.
“I wonder whether people would rather give money that’s going to benefit a lot of people but I’d say I’m a person and who you’re benefiting is a mum and a family,” Suzie said.
“That’s the hardest thing because I’m usually the person behind the scenes who’ll help anyone out but to actually put my hand out and ask for this help has been really confronting. You have to embrace it though.”
To donate to Suzie’s fight, search for ‘Suzie’s Fight to Stop MS’ on Facebook, or visit the websites suziesfight.wix.com/suziesfighttostopms and www.gofundme.com/suziesfight.
Any local businesses that would like to get involved by way of donation or sponsorship can contact Suzie on suziesfight@gmail.com.
