Weʼre raising £5,000 to Help Bron on the road to Mexico for HSCT treatment for MS
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Bron and I have been friends for almost half my life. We have road tripped the wiles of New Zealand, bounced around South America and sung Elvis until our lungs burst down the mean streets of Wellington. There are not many other people who would agree to travel across two countries in a half-cooked bus, boat across a lake to an island just to check out a rock that vaguely resembles a lion. This woman is a friend, a sister, a mother to two beautiful children and a total legend.
Eight years ago Bron was diagnosed with Multiple Sclerosis (MS). This has had a significant impact on her health, work and life. She has exhausted all treatment options available in New Zealand and has now made the decision to under go Hematopoietic Stem Cell Transplant (HSCT) treatment in Mexico as her best chance to halt the progression of her MS. This is an invasive and expensive treatment only available in a few countries around the world. Friends and family hope to raise money across both NZ and the UK to enable her to undergo this treatment.
Undergoing such intensive treatment (which includes chemotherapy) can be a scary and isolating experience. I will be travelling to Mexico with Bron to support, care and entertain her with my endless renditions of Heartbreak Hotel.
What is life like living with MS? I think Bron is the person best placed to describe how MS has affected her life. This her story below.
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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