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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It's 6pm and bedtime for me. Lucas is having another sleepover at Grandma's so I don't have to stay awake long enough to put him to bed- it's a legit challenge at times. Sienna, bless her, asked if she could have fruit for dinner and has taken herself to her room to do some drawing so I can have a quiet evening.
I'd heard a lot about the recovery 'rollercoaster', but until the last few weeks I hadn't really believed in it. I've had improvement in my vision and in cognition (in short bursts) and energy. But for whatever reason, a few weeks ago the fatigue hit hard and has been pretty unrelenting. Short bursts of activity result in hours or days of sleep being required. Cooking, looking after the kids, everything, is a challenge. Then the last few days I've had pain and stiffness in my hips and legs bad enough to prevent sleep. This is not uncommon in people with ms but is a new and unwelcome issue for me.
I've been working with the amazing Deirdre from @reset and restore body work and yoga which has been helping a lot and I've been working on my mindfulness. Psychologically this is the most challenging time for me so far. I'm keen to get on with life and rejoin society but am still constrained by physical limitations and energy limits. Recovery is hard work!
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This page was created on 9 Apr 2019 and closes on 9 Apr 2020.