My first symptoms were numbness and pins and needles in my right hand which got missed diagnosed as for carpal tunnel. I went for an emergency MRI and it turned out to be a tumour on my spinal cord in the C1 area.
They had organised to have an operation to remove that tumour, however the operation was unsuccessful as the tumour was surrounded by blood vessels and they didn’t know what these blood vessels were. So after investigations, they tested me for the VHL gene which come back positive and over time my right hand got weaker, my arm, right hip, right leg began weakening, the doctors wanted to leave me as long as possible.
I went for laser eye surgery for a leaking tumour behind my right eye. After 3 years I went in for spinal surgery to remove the tumour; the operation was successful however I have been left a tetraplegic spinal cord injury C1-C4 my right side has sensation but no movement and my left side has been affected by having no sensation but movement. I have extremely sensitive skin, bladder and bowel problems I am also a low risk for autonomic dysreflexia syndrome.
People ask me how am I so positive, I have no clue but my daughter keeps me going in life. I am proud to be a VHL warrior and I do not let my hot wheels define who I am.
