Me in healthier times, travelling, before "it" happened.
On the morning of December 27th 2008, whilst staying with family in the UK, I awoke to find a big black spot affecting the vision in my right eye. Within two weeks I had lost my vision altogether, in both eyes, only telling the difference between the darkness and the light.
Four months later, whilst in rehab I started getting lower backpain and within two months was paralysed from the waist down. I was informed I have a Neuromyelitis Optica-type illness, a rare and aggresive immunoneuroglical disease that attacks the sufferers optic nerve and spinal cord, often leading to blindness, muscle weakness and paralysis, pain, fatigue, cognitive issues and, for some, internal organ failure and death. In my case testing has never shown any 100% conclusive results and my Australian doctors are unwilling to treat a condition which they do not have a definite diagnosis for. My specialist speculates, although clinically almost identical to NMO, I could even have an illness unique to me.
After the initial episode I underwent harsh treatments, including chemotherapy, with the hope that the rapid progression I was experiencing could be stopped and lower limb function and vision restored. Unfortunately this was not in the stars for me. After twelve months I did very slowly start to regain some vision (woohoo) but eventually halted. I remain "legally blind", however, it is very borderline and compared to the darkness I used to live in I'm good.
During chemotherapy, IV steroids and plasmapharesis treatments.
On Mother's Day 2012 whilst in hospital to have a permanent feeding tube placed into my abdomen due to a paralysed stomach (gastroparesis), I had a major relapse and spent five months as a quadreplegic, unable to move from the neck down. It was EXTREMELY tough and I was petrified that was my future, but I am one of the lucky ones as I recovered and regained full upper limb function. I have been left with residual multpile organ issues but l just ignore the negatives lol.
After my relapse in 2012.
The last nine years have been extremely difficult, and I have spent the majority of my life in bed, bound by my symptoms, especially the pain caused by the neurological illness, as well as five other serious chronic illnesses. Despite this I always remain positive and look to what the future might hold for me. I believe this happened for a reason and I want to inspire others in similar situations as my own to keep a positive mental attitude in times of adversity. Just because you might be suffering physically doesn t mean you can't enjoy life. I have to live with the fact that I could relapse again at any time so believe I have to enjoy each and every day, no matter how I feel that day. Live for today, not for tomorrow as that might never come.
Why do I Need Help Now?
The nature of my condiotions mean I will always be a slave to the seven hours a day medication routine and symptoms of my various condtions, however, compared to the last nine years, life is fantastic right now, and only continues to get better.
I am asking for kind people to donate and help me make the most of my life. In September, alongside a much appreciated boost in funds from the government, I was able to purchase a much needed new manual wheelchair. When I started fundraising initially my plan was to purchase a top,of the range day chair, something suitable for a person with a relatively active lifestyle, so that I could get dual use out of it. However, things have changed considerably in the last 12 months since posting this campaign. In 18 months I have gone from bed bound 99% of the time, then 1 year ago really having to push hard to get out of bed and roll short distances every day or two, to now wheeling myself in excess of 15km, plus strength training for an hour post-roll every single day, and even training to complete a marathon!
In in July this year I had hoped to participate in a large local half marathon event. The organiser's policy stated I can only participate in a race chair in the specialist wheelchair race, therefore, as I don't have access to a race chair, I had planned to participate in the main event against able-bodied race-goers. Sadly this was not to be and, as I was informed I'd be a "trip hazard", I was forced to pull out of the race. The only way I will now be able to participate in an event of this magnitude is to get a proper race chair, something which is currently way out of my reach due to financial restrictions. Race chairs are custom built and the most basic model costs around AU$8,000. I have made the decision to use what is left of the cash from my previous donations, the money I had planned on using to upgrade all the "extras" on my new wheelchair to make it my dream chair, to purchase this race chair. But I need your help to do it please.
I want to inspire others in similar situations, and show them that even when it seems impossible, you can still achieve your dreams, but perhaps just approach them in a different way. Please help me to do this by donating to my campaign. I have worked so hard to get from quad to where I am now and have really turned my life around. Please help me to show that people in my situation don't need pity, we need strong support, motivation and encouragement. I want to get out on that marathon race course and show the world what happened after those things were offered to me.
Go to updates to hear about my progress and any current challenges Ive set myself.
Thanks everybody for your kind support and caring.
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