Here is a story about my journey to date - I am 40 years old, a proud and loving mother of two beautiful teenagers, I currently work full time and I have Multiple Sclerosis (MS). My MS is currently progressing at a scary speed and I am seeking HSCT treatment overseas to HALT my MS so that I can continue to enjoy my life with my children while still standing on my own 2 feet – hopefully in a pair of amazing heels!
Multiple Sclerosis is an autoimmune disease where your own immune system attacks you. HSCT involves removing your own stem cells, uses chemo to kill your immune system and then re-introduce your stem cells to restart your immune system. This procedure is not yet available in Australia as it is on at trial stage and I unfortunately do not meet the criteria. So I am now forced to seek facilities outside of Australia that can offer me this treatment that will give me the opportunity to stop my MS progressing and improve my quality of life. The treatment, travel and 12 months recovery and rehabilitation will need to all be self-funded and I need to raise the money to pay for it all -$150,000.
I stay mostly strong for those around me but MS is a disease with the most debilitating and life changing symptoms. Most days I am trying my hardest to mask or hide my symptoms at work only to get home and collapse unable to walk another step, unable to undress for bed or even have the energy to brush my teeth. I never forget it's there, the constant reminder is the tingling in my fingers that does not go away, the heaviness in my legs that sees me stumble or trip over my own feet and the rush to the toilet praying I don't have another accident. Well the time has come for me to take control of my own destiny. I will not sit back and let MS win, I'm taking my life back.
It was October 20th 2010 and I remember walking into the neurologist office to get results of an MRI. I don't know what I was expecting but certainly nothing you can prepare for. Really it's a blur now that I think of it - unfamiliar words and an overload of information but the words I remember - "I'm sorry Suzana but we believe you have Multiple Sclerosis"! So I sat there in shock, I had no words and I heard nothing else and first thought is of my kids - how do I tell them? Is it hereditary? No cure! So what next?
The ups and downs of life are hard enough when it comes to family, love, children, finances, career and health in general - but when you add a chronic illness to the mix everything seems escalated. I have become more emotional and more respectful of what and who I now have in my life. Five years on, still in a job I love, raising my teenage children and living in my own home, I can say that I am experiencing the best years of my life with this one big shadow hovering over, the gloomy cloud of MS.
The past 6 months has seen my MS progress a little more aggressively, what I could hide before is now evident - you can now see there is something wrong with me. Walking/shuffling slower, stumbling a bit more, not able to walk more than 200m before I begin to stumble - really such a short distance!! I need to get control of this but what can I do? My neurologist seemingly gives up and says I don't know!!!! Really Really!!! I advise him to refer me to the trial (for which I am told I don’t meet the criteria). I also decide to take control and apply to every HSCT program available in the world, over 10 other countries.
So I'm happy to say I have been accepted by three; Russia & Mexico (waiting list 12+ months) and Philippines 27/11/16, so Philippines here I come in a blaze of glory. I fully believe that this treatment will not only halt my MS but improve my quality of life. I will come back stronger, I will have halted my MS and most of all make my kids proud of their mum, proud of a person who took control, was positive and determined to not give up.