First and foremost, in order for you to completely understand the extent of how much Nicks health, and this fundraiser means to me, I believe it's necessary that I tell you about how Nick and I met and the way in which my life has changed for the better because of it.
To introduce myself, my name is Tessa Herbert, and i'm a 24 year old twin from Noosa Heads, Sunshine Coast. Coincidentally enough, Nick Hawkins also a twin, 24 years old, and a Sunshine Coast resident his entire life, was living only a short distance away and yet during that time our paths had never crossed.
Unknowingly, both of us unaware that soon enough our paths would align because of a diagnosis we recieved only months apart, Multiple Sclerosis- A progressive, incurable neurological disorder. So there we both were, travelling along the same rollercoaster, trying to figure out what was going on with our bodies, and battling the emotion that comes with being diagnosed with MS, and the uncertainty that every day brings.
For those of you that aren't familiar with the illness, MS is a degenerative brain and spinal cord disease that can cause all kinds of horrible symptoms.
So far for us we've experienced numbness from the shoulders down, spacticity, nerve pain, fatigue, cognitive impairment, balance impairment, bladder issues, optic neuritis (loss of complete vision in one eye), extreme pain, headaches, burning in extremeties, and unfortuantely, many more unbearable symptoms. It might sound strange, however, but the uncertainty that MS brings can often be just as unbreable as the symptoms you feel physically. That constant uncertainty that tomorrow could lead to further disability....
These were and still are constant thoughts that rest upon both Nick and I's minds every day, keeping us on edge as we're admittedly afraid for what's to come. It saddens me now thinking that, only a short drive away, Nick was fighting these horrible thoughts alone, and as was I.
About a month after my diagnosis, I decided to join an online MS support group in order to help me feel more 'apart' of something, and to ultimately make me feel less alone. I was desperate to meet anyone in the area that had the same disease. I just wanted to finally meet someone after three years of diagnosis after diagnosis, that could make me feel like 'me' again. And thats exactly what Nick did.
It was about four months after my post on the MS Support Group for Brisbane and Surrounding Suburbs that I recieved a message from Nick on Facebook, Nick told me that he came across my post and that despite our circumstances, he was so thankful to finally read it and to realise he wasn't the only one suffering the disease in the area. I felt the exact same way when I read his message. Nick and I also shared many mututal friends, and to be honest I was so excited to finally be able to meet him and share our MS journeys to one another. We decided it would be best that we meet for coffee, as typing became diffcult and we felt like we had so much to say to one another already.
In all honesty, Nick made me feel 'me' again from that day on. It was like I finally wasn't alone anymore in this battle. He was there for me, and I was there for him. Meeting Nick, and seeing life from an enitrely different perspective since my diagnosis are the two things I'm greatful for when it comes to this disease. To be thankful seems odd, but how can I not be, I am truly so thankful it lead me to you, Nick, and that we were able to be there for another and create a bond in which i'll never have with anyone else in this world and will cherish for the rest of my life.
It has almost been a year now since Nick and I met, and Nick has relapsed three times in that time. Nick has not only been burdened with more lesion progresssion this year, but progression throughout his entire teen years, with a high possibilty of disease activity for more than fifteen years of his life. Nick's MRI imaging of his brain and spine show development far beyond what would be expected for someone of our age. Nick is also faced with several T1 Hypointensities- more commonly known as 'Black Holes' which resemble a very old lesion that was once active which has now died, and is now irreversable damage, or in simpler terms, permenant brain damage. Which means, Nick will never be able to recover the damage in those parts of his brain. I have attended several of Nick's neurology appointments and it is likely Nick may possibly be in a wheelchair by the age of 30 due to his extensive spinal cord lesion load.
I'm hoping that with the support of friends and family, and of course, this community, we will be able to raise some money towards the treatment of Nick's Multiple Sclerosis. Our ultimate goal is to raise enough funds to get Nick over to Russia to recieve HSCT (Hematopoietic stem cell transplantation) treatment, a medical breakthrough that has become renound around the world as the only procedure to actually halt the progression of this terrible disease. HSCT is an intense chemotherapy treatment for MS. It aims to stop the damage MS causes by wiping out and then regrowing your immune system, using your stem cells.
Speaking from experience as a 24 year old, it's the most daunting thing for a young person to be burdened with such a disease, to have you're whole life turned upside down, and to know you are supposedly in the prime of your life, yet sometimes simple tasks are near impossible, or the constant assumption that you're drunk gets so frequently degrading that you want to scream, either way these are just some of the things that no 20-something year old should have to be concerned with, especially not for the rest of their life.
Thank you to everyone for viewing our story. Nick and I cannot express into words how much we appreciate your support. We hope that our story is at least used as some sort of platform for more exposure on the disease and to help provide support for other younger individuals dealing with the burdens of MS and other invisible ilnesses.
My sinceerest thanks,
- Joey Griffiths
- Lorraine Hackett
- Lizzie Bazzana
- Liz Sweet
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