Hi all, Nikki is doing really well in Cyprus and will is making improvements.
We are extending the date on the page due to still needing funds to keep her there and keep her treatment going.
Thank you to everyone who has helped us this far and for future contributors. ❤️
Hi all, firstly I would like to say thank you from Nikki and The family from the bottom of our hearts❤️
We have decided to extend the time on our page by a few more months, as we haven’t quite reached the goal amount yet.
Although in saying that the fundraising team are so pleased to say that give a little and the trust account we have managed to raise over $35,000! So half way there...
We are hoping that although Nikki leaves in a couple of weeks the money will still keep coming in to help pay the trip back. As we do not wish this to be a burden on Nikki’s family.
So exciting things to come and we wish Nikki all the best for her treatment and recovery xx
Hi guys thanks so much for all your donations.
We are extending the time limit on Nikki’s page for health reasons.
We would have hoped Nikki would be moved back to Ashburton by now. Unfortunately as she is so unwell her trip may be stretched out, awaiting her arrival back home.
Would would ideally love her there in Oct but will be happy to get her there in January.
Thank you for all you love and support, we appreciate all that is being done.
Nikki is always trying to help others, even if just singing from her bed and sharing on YouTube. This year she was recognised for her courage and commitment to others via the Visible Heroes award, which came as a complete surprise to her after others nominated her without her knowing!
You can read more about this award and Nikki's words as to why it is so important to her to continue helping others and raising awareness, here:
https://www.invisiblediseases.com/blogs/2018-visible-heroes/nikkijo-tyrrell
Hi guys, I’ve had a few of you ask what the full amount is needed for Nikki’s cause.
Well an estimate has come to the conclusion she needs around $70,000. This includes flights, treatment, Nikki’s helpers costs and more.
Our target is by September so please share with as many people as possible.
Regards kylie
Hi everyone. Well I have some fairly big news ... we are aiming to get me to Cyprus for treatment in September. Things just aren't going well at all, I progressed to some degree with intensive treatment over the last few years, I am no longer completely bedridden but I am still mostly housebound and I crash from the most minor exertion. Even today I have spent the night and all morning seizuring.
On some levels the improvements over the past three years of intermittent treatment are considerable - when you were functioning at 2% and holding on to life by a thread then you get to 8/9% it feels amazing - but it's when I try to do the most basic of things like washing my own hair, or having a conversation on the phone, or trying to see visitors or meet new people, or when I crash from the tiniest outing less than 1km from my home - that's when it becomes obvious just how limited I still am.
I constantly try to do all I can to partake in life and have my life have some meaning - I have many compositions all completed that I wish to record, I have the occasional day where for 20minutes or so I can pull on my reserves and adrenaline to play or sing and I get lost in the music, I get a taste of how it could be if I were healthy, that incredible feeling when music takes over ... but then the crash comes. Sometimes it's in minutes, there are times I have literally stood up from the piano stool only to collapse and have a seizure right there on the floor. I can't go on living like this, a shadow of myself.
The current treatment is all consuming and also coming to the end of the road - I can't keep the PICC line in forever and it is futile having to rely on near daily treatments just to be able to get out of bed at all, and to decline so quickly without treatment. It is the only thing making life partially bearable but it is still a living hell. There are also so many parts of treatment I am simply not able to do or not able to tolerate - the treatment of Lyme is almost as bad as the illness itself. I've gone through unimaginable horrors for twenty years, mostly alone, how I am still alive let alone have any fighting spirit left I have no idea but here I am. Nonetheless, this needs to change. I have fought so hard for so long. I just want even a partial life back, a life where I can at least interact with family or friends, where I can get sleep or not have my body react to everything as though it is poison (eg even just a chamomile tea let alone any medications or herbs to try to treat the disease or manage the symptoms).
There have been other factors holding me back too - the worst possible living situation (right beside a subdivision, constant limbic overload and seizures from the noise, nervous system always on high alert), I am having to shift in five weeks time, moving away from friends, supports and carers that have taken years to build up but due to lack of funds and housing shortage plus the illness taking all choices away from me, where I live is also dictated to me, rather than me having any great choice in the matter. I am constantly under huge secondary pressures as a result of the illness, which is a vicious cycle. If I could even get a little better, I would have more choices in life and more resilience to life itself, not getting so direly ill from the slightest exertion, not having to shift house all the time or be reliant on carers and limited supports.
Cyprus offers huge hope, I have been following progress of other Lyme patients for two years, many of whom have returned to work, life, sport, riding horses - things I can only but dream about right now. Twenty years - what have you achieved and experienced in twenty years? Career? Housing? Family? Relationships? Marriages? Travel? Fun? Sport? Study? What if all that, and even the basics like quality time with family and friends was all taken away? Can you imagine suffering intensely EVERY SINGLE DAY AND NIGHT, occasionally pushing through and thinking for an hour or two you feel a bit better, trying so hard to make life happen only to come crashing down every time. Suffering for EVERY exertion, not one day without symptoms since that fateful day in 1998. Twenty years. It is unfathomable. But it is my life. And it has to change. I can't let the next twenty years be the same
Please share widely, ask any businesses, friends, anywhere you can think of. Even $1 is appreciated. It's time to get my life back. Thank you!
Nikki makes every effort to create 'silver linings' and positive occurrences in her life, including singing from her bed to inspire others. This is one of her youtube clips
