Bron's fundraising for HSCT in Mexico. Luchando por un camino sin final
I'm on a journey to Mexico for HSCT treatment to halt progression of my MS and allow me to live my best life possible.Wellington
I'm on a journey to Mexico for HSCT treatment to halt progression of my MS and allow me to live my best life possible.
I am a 38-year-old, mother of two awesome kids, Sienna (6) and Lucas (3). I woke up one morning in July in 2011 to discover I had no vision at all in my right eye. An MRI showed multiple brain lesions and after a further relapse where my hands felt like they were on fire I was diagnosed with Relapsing Remitting Multiple Sclerosis.
Since then I have had multiple relapses including loss of vision in my 'good' left eye, burning hands, and tremors. I have permanently lost the central vision in my right eye and I experience high levels of fatigue. I am at risk of losing sight in my 'good' eye leaving me blind, or losing my mobility which is very common with MS.
After working hard for 10 years as a lawyer I had to give up my legal career to manage my MS. I have recently been studying International Development as I am keen to still be able to make a difference in the world.
I was initially on a daily injection but continued to relapse and am now on an immune suppressant which is administered every six weeks in Hospital. This immune suppressant carries the risk of a fatal brain infection as a potential side effect. Knowing this weighs on me constantly. After a further episode of burning hands earlier this year that had me unable to care for my kids and in high levels of pain, I decided to apply for Hematopoietic Stem Cell Transplant (which includes chemotherapy) in Mexico.
It is a month-long treatment in Mexico with around three months home quarantine on my return to NZ, while my immune system begins to re-build.
The results from this treatment have been really great but it is not yet available in NZ for MS. My admission date in Mexico is 14 October 2019 but the cost of treatment, carer, and flights is over NZ$100,000!
My daughter asks why I am always tired, sick and needing medicine. She made me a star chart for doing things like reading stories and making dinner. These should be easily achievable for a mother and yet on days when even a wisp of air causes pain and I can't hold a book; or when fatigue is so extreme cooking is a fire risk and even cereal for dinner is a challenge, completing these tasks is an accomplishment.
My children are still young; they still want me to play. This is something I already struggle with and will only get harder without this treatment. There are few things more terrifying than the fear of not watching your children grow or what would happen if you could not care for them.
I'd appreciate any and all help to get to Mexico for treatment.
Use of funds
The funds will be used for HSCT treatment in Mexico, flights, carer and post-treatment assistance
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Happy Level 3 Eve everyone. It happily coincides with my 6 month stem cell birthday :)
I'm pleased to be able to say that I'm doing really well. The pain has improved and my fatigue is better than it has been for a long long time. I still have to manage the fatigue quite carefully- a game of monopoly takes a few days to recover from- but I think the lack of driving for school/ kindy drop offs etc has really helped. I've even been cooking dinner!
I've been in isolation most of the last 7 months (!) and will be staying in it until Level 1. Dare I say, I've quite enjoyed having time with the kids over the last month. I missed out on time with them over the Christmas holidays as I was too unwell. Although it has helped having mum in our bubble as the kids get to have a break from each other.
I hope you are staying safe in your bubbles and I echo the call to support local businesses when they reopen. I was so blessed to have the support of so many with our fundraising.
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This page was created on 9 Apr 2019 and closed on 9 Apr 2020.