On the 14th October I'll be TRYING to tackle the stairs of the iconic Sydney Tower Eye, along with hundreds of other firefighters as quickly as possible. It's 1504 stairs (98 floors) all while wearing my fire fighting structural gear of 20kg, including the cylinder.
And all in the name of Motor Neurone Disease (MND).
I'm hoping to raise $1504, Which is $1 for every step. All donations will go towards MND research at the Macquarie University MND Research Centre.
For those who do know me, I do also love a BIG challenge. But nothing comes close to the challenges that these individuals face each and every day of their lives.
MND is a progressive, terminal neurological disease. MND affects the nerve cells (neurones) controlling the muscles that enable us to move, speak, breathe and swallow, causing them the degenerate and die. A person’s senses and intellect are not affected.
MND can strike anyone anytime.
It is estimated that there are presently around 400,000 people worldwide diagnosed with MND and about 2000 people with MND in Australia. The symptoms are very mild and difficult to diagnose.
There is no known cause for MND, which is why it's so vital to keep this research centre operating. So that one day, maybe not in our lifetime, but in our childrens' childrens' lifetime they would have found a cure, better yet a way to prevent it.
So please help me reach my target.
Every dollar raised will directly support vital MND research at the Macquarie University MND Research Centre.
Any amount big or small is greatly appreciated
I was given permission to share this true story with you all. This person would like to remain anonymous. Please take a moment to read it, as this is happening right now.
"My grandmother has Frontotemporal dementia (FTD)
Amyotrophic Lateral Sclerosis (ALS)
Progressive Bulbar Palsy (PBP)
She was first diagnosed with FTD which has lead to 2 types of MND (ALS & PBP) it is an extreamly fast paced disease, everyday leads to new challenges for her, just 2 weeks ago she was walking (with her walker) and eating normal food, now she cant walk and is on puree food.
Her speech gets worst everday, we can now only understand few little words and try hard to piece them together. She has a chart she can point at to communicate but can no longer write as her hand muscles are too weak.
All medications now have to be liquid and they are talking about giving her a feeding tube as eating is becoming too dangerous (as she chokes easy due to loss of tongue muscle control)
To think this time last year she was talking perfect, walking perfect (no walker), living on her own, cooking and looking after herself to now completely dependent on people to survive just blows my mind.
It is a horrible disease. I had no idea about it until someone close to me was diagnosed with it. It is so hard being completely aware there is nothing anyone can do to help or fix her, with no cure it is just a painful heartbreaking waiting game.
Palliative care started today. It's comforting to know she is getting the best care but we also know that it means she wont be with us for much longer. I hope and pray they find a cure soon, what you are doing gets us one step closer and for that I am eternally grateful. Good luck. I will be thinking of you on the day."