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Nikki's Story

Nikki is a 49-year-old, single Mother of three from Wagga Wagga in NSW. In 2018, her world was turned upside down when she suffered a sudden and unexpected change to her health.  

Up until her complications, Nikki was a very active person. She grew up on a farm with horses & cattle. Her lifestyle was always centred around activities; kayaking, bush walking, water skiing, touch football, horse riding, whatever it was, she loved being outdoors with her kids. Shhad competed at local, national & international levels & now lives on 11-acreswhich was part of her family property. She was a very independent, enthusiastic mother and individual.  

When Nikki developed Transverse Myelitis, it hit her out of the blue. Initially she thought it was a back injury, but within days she had lost the ability to walk and was rushed to hospital. Two months later, she developed a staph infection in hospital and went into septic shock, suffering mild heart attacks & strokes. At this point, Nikki almost passed away and spent two weeks in the Intensive Care Unit. Her children were told to say goodbye to their Mum.  

“It was such an ordeal for my children and my family. That’s what upsets me most really, Yes I’ve been through it, but it’s how it affects your loved ones around you. I think them suffering hurts me more.” 

Miraculously after 14 months in hospital, first in Wagga Wagga and then in Sydney, Nikki pulled through. Now she requires a wheelchair to get around, needs regular check-ups and autoimmune suppression treatment to manage her final diagnosis of Neuromyelitis Optica Spectrum Disorder, which is where the body’s immune system reacts against its own cells in the central nervous system.  

“I’m not out of the woods, but at least I’m home and I can be a Mum again. I am looking forward to getting my strength back and developing my ability to cope with normal life activities.” 

To assist her rehabilitation at home, Nikki applied for an At Home Care Grant for a specialised recumbent cross trainer that mirrors the equipment she was able to use at the rehab centre in the hospital. Not only does the equipment help Nikki to stay at home, it also allows her to revisit her old favourite hobby of being active 

“It has been incredibly frustrating throughout my illness and recoveryI desperately want to be active, but kept hitting brick walls, stopping me from doing things. This is amazing – I jump on the cross trainer and just grin and giggle to myself saying ‘yay, look what I’m doing!’ 

“It’s fantastic, because I can use it completely independently now that it’s set up. I don’t need anyone to help me transfer, I’m safe, I’m not at risk and I don’t feel like a burden on anyone.” 

Because of the Immunosuppression aspect of Nikki’s condition, illnesses like COVID and even just the common cold or flu pose a huge risk to her health. With services and rehabilitation often being accessed by many people, her risk is significantly higher when she must go out into the community. Having her equipment at home means that she can keep herself safe and stable and focus on increasing her endurance in order to cope better with daily life.  

Nikki says she never could have gotten through any of this without her children or her family. Having worked as a registered nurse, Nikki has looked after young Mum’s, just like herself, who have had to live in nursing homes because they had no other options. She knows that this could have been her fate, if not for the support of her networks and Youngcare 

I have taken care of Mum’s in nursing homes who don’t even know that they are mother’s anymore. To stay well enough and stay at home, which this grant has helped me do, that’s quality of life to me. I can look out the window and see all the hard work I’ve done in the past and that itself is reassuring and comforting. Staying at home is absolutely vital. 

“Getting the grant was like winning the lotto and it took me three or four times to read the acceptance letter and process it. We are so thankful, so appreciative. This is a game changer, not just for me but for my children. It’s very promising that people understand, and people do genuinely want to help. I cannot thank you enough for the availability of this funding.” 

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