Our friend and fellow employee Toddy has been working with Ash in Lining as Maintenance Manager. He is a kind hearted, caring and dedicated father to his beautiful son. He would never ask for help – it’s just not in his nature – so we are taking over.
Toddy’s son’s name is Tyson Stanley.
Tyson Stanley is a young man from Somerville who was born with an extremely rare genetic condition called Fibro-dysplasia Ossificans Progressiva or FOP. He is literally 1 in 2 million. FOP is a condition which causes the body to grow extra bone. Ribbons of bone can form inside the muscle, tendons, ligaments and other connective tissues and across the joints effectively freezing the joints into a solid position. In Australia we have just 15 confirmed cases of FOP and only approximately 800 worldwide. Things as simple as a knock or bump, or as invasive as intramuscular injections or surgery can trigger this bone growth. Other times it can start with no provocation.
Although Tyson was born with FOP, we were unaware of what his condition could have been until the age of 6, and he was not officially diagnosed until he was 9 years old. Tyson’s particular form of FOP is so rare, that we have been told, there may only be 1 or 2 other people worldwide who have it in exactly the same way as Tyson.
When he was born, Tyson developed in much the same way that other kids do, with only a couple of indicators that something was ‘not quite right’. He was able to walk and run with the other kids and was a happy, social little boy. At 6 Tyson had surgery to remove what they thought was a tumour in his right leg. However, when the surgery was over and done, Tyson was no longer able to use that leg and spent the following years using crutches for getting around the home and classroom and a manual wheelchair for longer more strenuous distances.
Tyson was quite stable for some time. At the age of about 14 Tyson deteriorated further, moving from using crutches as his main source of mobility assistance to being in his wheelchair full time. His right arm was ‘frozen’ into position and he was unable to use his crutches at all. Tyson still managed to do many of the things other young teenagers did.
In the last couple of weeks Tyson has experienced another flare, this time in his left arm. The result has been devastating for Tyson and we now need many things to help accommodate his new ‘normal’.
Our immediate environment does not suitably accommodate someone with these kinds of limitations. At the top of our priority list are modifications to our family home. We are currently in the planning phase but anticipate moving to building stage in the next few months. We also need to invest in a vehicle suitable for transporting Tyson (and the rest of his family) in his electric wheelchair. However, because of his new limitations we also need to make modifications to his electric chair. Currently, Tyson is mostly housebound because of these two problems. There are many smaller things that we need to organize and consider for Tyson on an ongoing basis but these are main concerns at this stage.
Tyson is a strong, capable 17 year old who manages to problem solve so many of his challenges. He loves his footy, being an avid supporter of the Doggies, hanging out with his mates, joining in at youth group and gaming. He tries to keep as active as possible training once a week at Cranbourne Crossfit. And he is very keen to seek out some kind of job or future career.
Now is when we step in! The Steller Family to the rescue! We need to raise much needed funds to assist Tyson and his family to live the best of the best lives they possibly can! The funds we raise will go towards the below much needed items;
Ø Wheelchair – modified control so that Tyson can control it himself. Something handheld like a remote control.
Ø Hospital style bed - http://www.sensitivechoice.com/product/macmed-medical-mattresses-patient-support-surfaces/
Ø Comfortable recliner type chair for sitting in at home
Ø A carer to help him at home
Ø Taxi card – to assist him getting around on his own
Ø Clothes need to be modified to fit properly and to be able to get them on and off
Ø New therapies to assist Tyson with his mental health
Ø Car – VW multivan modified to fit an electric wheelchair. Must have 6 additional seats, at least 3 with car seat anchor points. Another option is to modify our current van. To do this they would need to have windows put in, flooring and ceiling/sides put in, barrier between the front and back removed, seats added in the back, wheelchair lift and locking mechanism put in.
Ø House – demolished and rebuilt to accommodate Tyson and rest of family. Technology that allows Tyson to turn on lights, tv, heater, open doors etc – (amazon echo?). Rail system (or provisions for later installation) in bedroom and bathroom to help in and out of chair.
We very much appreciate your help and support and will be updating you regularly.
- Peski Tiling
- Lauren Walsh
- Brendan Knight
- Peter Tsigas
- Kristin Murphy
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