My Dad vs MS

One Man, One Journey

Together, let’s rewrite the story

“Where to start… when the fear of asking, stops you in your tracks”

I want to thank every single person who has given time and energy to remind us that life’s challenges, sometimes need a village. With this encouragement, I find myself trying to build a village that will stand with us through a life-changing experience to rewrite Dad’s story.

Who is James?

James is a father, husband, son, brother, uncle, chef, and very proud small-business owner (One Man One Pan – his greatest passion). James is also a Multiple Sclerosis fighter. The thing about Dad is that many would not even be aware of his diagnosis because he brings to each of his relationships an abundance of warmth, compassion, humour, and heart!

Having MS, he silently faces each day with a fight to live the best life possible and at first glance, it is most likely unnoticeable, yet the weight of this continues to challenge his identity. There’s no cure for MS and constant unpredictability. Each day brings fear of a new relapse and permanent damage and disability caused – a very unknown future.

Despite all this, Dad really is a fighter, he’s faced many obstacles to reach this point. In 2002, Dad first started having MS symptoms. Any testing underway at that time was forced to stop because, in 2003, he was involved in a major motor vehicle accident. With that, we welcomed multiple emergency surgeries, aortic stent insertion, a coma and intensive care for 2 weeks. Sadly, this 2-week period was not the end. What remained was significant physical injuries, resulting in years in hospital and rehab and ongoing surgeries to rebuild him over a decade. 15 years later, Dad was the best he could be, and we are all so proud of his unwavering strength and determination.

In 2017 when things finally settled and Dad got to a better place, the investigation into MS restarted as further neurological impacts became visible and later a formal MS diagnosis followed. With this diagnosis, treatment to manage MS symptoms began but was short-lived as we discovered he had cancer. With a diagnosis of cancer, all treatment had to be stopped. However, he has since overcome two episodes of renal cancer in 2019 and 2020. Not one to complain or seek sympathy, this is all a testament to his strength and inspiring nature. Now there is just one more hurdle to go – stopping MS in its tracks!

What is Multiple Sclerosis (MS)?

It is a disease with NO cure.

MS is a chronic neurological, autoimmune disease that affects the central nervous system. The body's immune system attacks the protective covering of the nerve cells in the brain, optic nerve, and spinal cord.

MS is unpredictable with regard to relapse (attack), progression and symptoms, but what is certain is the outcome. MS continues to progress and worsen over time, with significant impact and decline on mobility, coordination, cognition, sensory, and functional capacity. The impacts are shattering, and we know this firsthand after watching the same decline in my grandmother, who is now dependent on others to have day-to-day needs met. Sadly, a constant reminder of the inevitable.

For Dad, there has been significant regression over the last 12 months, resulting in:

• Balance, coordination and dexterity issues

• Muscle weakness

• Spasticity

• Numbness

• Thermoregulation issues (extreme heat)

• Vision problems (Optic Neuritis)

• Cognition decline

The most significant being constant fatigue, pain and balance concerns causing challenges to everyday tasks.

Once damage is done, it cannot be reversed and it is for this reason, Dad is commencing a journey to rewrite his story, with a Haematopoietic Stem Cell Transplantation (HSCT).

Why HSCT?

With no cure for this debilitating disease, in Australia, Disease Modifying Treatments are used to slow down relapses and somewhat manage symptoms. Dad has trialed many over the years but with no success. In addition, options are limited as some cannot be used due to his susceptibility to renal cancers.

HSCT has been used widely all over the world for over 20 years to stop MS progression. It is a stem cell treatment, which includes chemotherapy to completely destroy the immune system, so the body stops attacking itself. Patient's own stem cells from bone marrow are then reintroduced, to rebuild the immune system which ‘forgets’ to attack and cause damage to the central nervous system that MS has absolute control of. It is not intended to reverse any damage, but to stop MS in its tracks and any further progression.

HSCT has unfortunately been on trial in Australia for over 12 years. Due to the rapid progression of MS, Dad does not have the luxury of time on his side to wait for HSCT to become available in Australia and it is for this reason, he now embarks on a new path - a trip to Clinica Ruiz in Puebla, Mexico to undergo treatment.

If you are interested in learning more about HSCT and the facility, you can find more information here

How you can support James to rewrite his story

As a family, asking others for support does not come naturally, but I write remembering what others have taught us in every challenge we have faced alongside Dad - how a village can bring about change.

Dad and Mum leave for Mexico in May for a month-long treatment. The cost of treatment is $54,500 USD (approx. $80,000 AUD). This is without the added expense of international travel and the medical care, haematology and medication required upon return home to ensure his body is recovering from this hard-hitting treatment.

If donating is not possible, you can still help. Dad will still benefit from your generosity in sharing this page with your networks and your well wishes, together we can create a village around him and rewrite his story!

Share, share and share, with the love of family, friends, and maybe even complete strangers anything is possible…

As an avid sharer and lover of life and connection, Dad will continue to use his business platform to share his journey in the hope of helping others. You can follow his Mexican adventure on Instagram or Facebook, while he rewrites his story, getting ready to continue making paellas all around Melbourne when he is back and ready to go again.

Please note: Any funds donated and not required will be used to pay it forward and help another person to access HSCT and change their story.