Operation Tyson - Living with FOP

My mate Tyson is an absolute legend.

(AFL Grand Final 2016)

He is 17 and suffers from an extremely rare condition called FOP or 'Fibrodysplasia ossificans progressiva'. To put it briefly, his muscle and joint tissue are slowly being overtaken by bone tissue, ie his muscles are turning to bone. So as time progresses he is being caged further and further into his own body.


As a Fitness Coach, I have trained with Tys once a week for a good 6-7 years now. I have watched him go from walking with crutches and being able to stand up unassisted, to being wheelchair bound but still upper body able, to now extremely dependant to the point where he needs to use tongs to reach his mouth to eat, and requires extra assistance for the things a 17 year old really doesn't want assistance with...


Early days, our training sessions included running with crutches, balancing on his feet and hopping over a rope, seated cricket and full blown seated boxing matches. Today we are restricted to banded stretching, passing a tennis ball and pulling himself along in his wheelchair with his 1 semi able leg. After each session he now requires me to pick him up and put him in the car. Regardless of his restrictions, we always have fun during our sessions and it gives him a chance to chat about himself and what he has been getting up to in his life.


He is tough as nails and rarely shows any frustration with his condition. But I know deep down it would be hard. He is incredibly intelligent, loves to read, loves the footy and his Bulldogs, and is a mad Pop Culture fiend. From Marvel to DC, Walking Dead to Game of Thrones, Harry Potter to Rick & Morty. Tys knows about it all and loves it. 


Tyson deserves the absolute world. There is currently no cure for his condition, and due to him being 1 of 14 people in Australia with FOP, there is zero government funding towards finding one. He has a beautiful family to support him, as well as his 4 other amazing siblings. I am sure the costs required to help Tyson would be high, but it is nothing to them to have such an awesome person as Tyson. 


I want to do something incredible for him. Not to raise money for research, he deserves something purely for him. He deserves something amazing. He deserves to go to the greatest pop culture convention in the world. He deserves to go to Comic-con in San Diego, USA. July 2018.


On the days of May 24, 25, 26 and 27, 2018 I am going to complete 4 huge physical challenges. An open water swim, a huge air resistance bike ride, 8 hours of CrossFit training and a trail run. 1 challenge a day for 4 days.
1/ Swim - Mt. Martha Life Saving Club to Mornington Pier (or vice versa, water currents pending)
2/  Bike - 300km's on the Assault Air Bike (fixed fan bike). CrossFit Cranbourne, Cranbourne.
3/ CrossFit - 1 CrossFit style workout an hour, every hour, for 8 hours. CrossFit Cranbourne, Cranbourne.
4/ Run - 16 Laps (51kms) of the Lyrebird Track, Dandenong Ranges.



I am calling on as many people as possible to help in any way. I am doing this to raise money to get Tyson to San Diego... Flights, accommodation, Comic-con ticket, food, spending money. Everything he needs to have an epic adventure. 


You can help by joining me on any of these challenges and raising money yourselves. You can buy into these challenges by donating to the fund.  You can just donate to me for completing the challenge. You can tell your friends, family and community to get on board and help make this goal a reality for Tyson. This is going to be the toughest physical challenge I have ever put myself through... but it is all worth it if it means Tys can go to Comic-con. 


Finally, any support I can get for the challenges would be fantastic. Your knowledge and experience, or ability to help/volunteer would be hugely appreciated.

Training has already started. Lets do it for Tys. 

- Stu

**The location setting for this campaign is stuck on New Zealand. It will not let me change it to Cranbourne. I am working to fix this error.

Donations

 See top
  • Wayne Coulson 
    • $50 
    • 12 mos
  • Tokyo weekend group 
    • $15 
    • 31 mos
  • claudio Grinberg 
    • $5 
    • 32 mos
  • Anonymous 
    • $5 
    • 32 mos
  • Kevin Robarts 
    • $500 
    • 34 mos
See all

Organizer

Stuart Cunningham 
Organizer
Devon Meadows VIC
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