Tyson's Fight against FOP
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Tyson's story.
Tyson was born with a rare (1 in 2 million people), extremely debilitating condition known as Fibrodysplasia Ossificans Progressiva (FOP).
Since the day Tyson was born in the year 2000, he has been somewhat of a medical mystery. Years of genetic testing proved no match for Tyson's disease. It wasn't until 2008, when Tyson was 8 years old that genetic testing confirmed what we all feared, that Tyson had a genetic variation of the rare condition of FOP.
FOP causes muscle, tendons, ligaments and other connective tissues to turn into bone. This can occur anywhere within the body. It does not discriminate and it can eventually take over leaving the person unable to move. For Tyson it has severely affected his mobility, restricting him to a wheelchair most of the time. Tyson can only stand with aid of crutches and even this is extremely difficult. Tyson cannot move his right leg or his right arm at the shoulder. Losing the use of his left arm is a possibility and something that frightens Tyson, as losing the use of both arms would mean completely losing his independence. Sadly, there is no control over this. There is no cure. There is no drug. We only have hope.
At six years old Tyson had an operation to remove a benign tumour that was growing in his right hip joint which was causing Tyson to walk with a limp. Only weeks after the operation, we discovered Tyson had grown new bone in place of the old tumour. It was then that a rheumatologist gave a tentative diagnosis of FOP. This tentative diagnosis bringing the frightening revelation that Tyson would never be the same again.
Tyson lives in pain day to day but has always taken it in his stride. Tyson is a remarkable young man who needs as much help as he can get.
Tyson is an avid reader and a huge footy fan. He is one of the Western Bulldogs biggest fans!
This page has been set up for Tyson and his family. Tyson's family home is in need of major renovations. They currently live in a three bedroom, one bathroom home in Melbourne's south-eastern suburbs. Tyson has three siblings, all of which share a room in order for Tyson to have the room that he requires. The house is by no means set up for a disabled child. There are steps to gain entry into the house and moving around the house in his wheelchair is difficult. We are hoping to raise money to begin much needed renovations.
On a personal note; I fell in love with Tyson when he was just one day old. In my heart I knew I would never leave his side and I knew he would impact me in more ways than one. He has taught me that courage is built, determination is proven and physical barriers have no power over the mind. Tyson is my everyday hero. I will fight for him until we have all that he needs & I will NEVER give up.
Tyson was born with a rare (1 in 2 million people), extremely debilitating condition known as Fibrodysplasia Ossificans Progressiva (FOP).
Since the day Tyson was born in the year 2000, he has been somewhat of a medical mystery. Years of genetic testing proved no match for Tyson's disease. It wasn't until 2008, when Tyson was 8 years old that genetic testing confirmed what we all feared, that Tyson had a genetic variation of the rare condition of FOP.
FOP causes muscle, tendons, ligaments and other connective tissues to turn into bone. This can occur anywhere within the body. It does not discriminate and it can eventually take over leaving the person unable to move. For Tyson it has severely affected his mobility, restricting him to a wheelchair most of the time. Tyson can only stand with aid of crutches and even this is extremely difficult. Tyson cannot move his right leg or his right arm at the shoulder. Losing the use of his left arm is a possibility and something that frightens Tyson, as losing the use of both arms would mean completely losing his independence. Sadly, there is no control over this. There is no cure. There is no drug. We only have hope.
At six years old Tyson had an operation to remove a benign tumour that was growing in his right hip joint which was causing Tyson to walk with a limp. Only weeks after the operation, we discovered Tyson had grown new bone in place of the old tumour. It was then that a rheumatologist gave a tentative diagnosis of FOP. This tentative diagnosis bringing the frightening revelation that Tyson would never be the same again.
Tyson lives in pain day to day but has always taken it in his stride. Tyson is a remarkable young man who needs as much help as he can get.
Tyson is an avid reader and a huge footy fan. He is one of the Western Bulldogs biggest fans!
This page has been set up for Tyson and his family. Tyson's family home is in need of major renovations. They currently live in a three bedroom, one bathroom home in Melbourne's south-eastern suburbs. Tyson has three siblings, all of which share a room in order for Tyson to have the room that he requires. The house is by no means set up for a disabled child. There are steps to gain entry into the house and moving around the house in his wheelchair is difficult. We are hoping to raise money to begin much needed renovations.
On a personal note; I fell in love with Tyson when he was just one day old. In my heart I knew I would never leave his side and I knew he would impact me in more ways than one. He has taught me that courage is built, determination is proven and physical barriers have no power over the mind. Tyson is my everyday hero. I will fight for him until we have all that he needs & I will NEVER give up.
Organizer
Talia Wilson
Organizer
Somerville VIC
