An Eltham mother of four is on a crusade to raise $100,000 to receive life changing treatment for her multiple sclerosis in Russia.
Kylee Boyes-Price (32) is a solo mum of four boys, Kurt, 13, James, 11, Josef, 9 and Nash, 2, and has set up a Givealittle page to raise the amount for stem cell treatment.
"I am doing this for my kids because I don't want them growing up watching me deteriorate and with the fear of what is going to happen ... I don't want anything to happen to me and my mum is raising four kids.
"I want to be a great mum, supporting the boys in their sport, schooling and caring for them as a full time mum should. I want to be normal again, I want to wake up every morning and be glad I'm alive — at the moment I fear living as much as I fear dying."
Kylee was diagnosed with MS a few months after giving birth to her youngest son in April 2016. Her symptoms were diagnosed as stress related and depression after her marriage broke up when her youngest was only a few weeks old.
"But my body continually crashed, the right side of my body was becoming increasingly weak, and I would drag my leg. At times I was unable to walk and would require support of the walls to get me from room to room. I struggled to lift the baby, developed double vision, temporary blindness and imbalance and vertigo."
An MRI was ordered and in December 2016 she was diagnosed with MS — after they found multiple lesions on the spinal cord and upper thoracic cord.
"We were all in shock initially. I had heard of it — even googled it and came to the conclusion this could be the outcome but I was scared to hear the initial diagnosis and I just said 'what do we do now'."
In March last year Kylee had another relapse which then qualified her to apply for disease modifying therapy which is funded through Pharmac at a cost of $2400 per month.
She suffered a set back just before Christmas after having a fall in the garden and breaking her ankle badly and her recovery time was a lot slower with MS. She is heavily reliant on her mother Glennys Price who also lives in Eltham and has been her rock — giving up full-time work for part-time work so she can be there when needed and help look after the kids.
She installed an alarm in her daughter's home and they speak on the phone often during the day.
" I couldn't do it without her."
Kylee describes fatigue is one of her worst enemies and has also developed extreme muscle pain, pins and needles as well as a loss of feeling in the soles of her feet and numbness in several toes. She suffers from "brain pain" and constant fatigue and has sensitive eyes — having to wear dark glasses most of the time, even inside at night.
"I suffer extreme exhaustion. I am so tired I have insomnia.
"I get a lot of anxiety that comes from the MS — it's an anxiety of 'have I remembered everything' because my memory is quite bad. I also feel anxious about my mobility and wouldn't go for a walk around town. I would be too self conscious to, unless I had the pram as a way to steady myself ."
For the stem cell treatment in Russia, the stem cell will be harvested before being treated, frozen and stored ready for reintroduction after chemo.
"I've got a couple of weeks after that in isolation before I come home, and then I need a lot of recovery time. It means a long time without seeing my kids, and when I get back, there is probably more time after that. There are a lot of safety precautions to follow post transplant. I have to do this, not just for me, but for my family.
She says that the transplant will not cure MS but halt it with a chance of gaining back a bit of what she has lost. She hopes to slowly raise the money over the next 18 months to two years.
"I just don't want to be dependant on somebody else."
To donate go to www.givealittle.co.nz/cause/naki-mum-with-ms-clings-on-to-hope-for-a-future-wi. Kylee also has a Facebook page called 'Kylee's trip to Russia for stemcell transplant' where other fundraisers including raffles and fashion shows are listed.