A WARRIOR with a rare genetic condition is raising awareness of it to support others suffering from it.
May is designated as the Von Hippel-Lindau awareness month and aims to support those with a genetic condition which starts early in adulthood.
It is extremely rare and only affects one in 36,000 people.
Those who do suffer from VHL can develop tumours in their brain, spinal cord, eyes, kidneys, pancreas and adrenal glands.
Kayleigh Stephens, from Halsted, had her first symptoms during her young adulthood.
She felt numbness and pain in her right hand which was originally thought to be carpal tunnel.
After suffering for some time, she went for an emergency MRI, which discovered a tumour on her spinal cord.
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Ms Stephens said: "They had organised to have an operation to remove that tumour, however, the operation was unsuccessful as the tumour was surrounded by blood vessels.
"The doctors had no idea what these blood vessels were, so after investigations, they tested me for the VHL gene which came back positive.
"Over time my right hand got weaker and soon enough my arm, right hip, and right leg followed and began weakening."
To take care of a leaking tumour behind her right eye, Ms Stephens went for laser eye surgery and after three years she has to undergo more spine surgery to remove another tumour.
"The operation was successful, however, I have been left with a tetraplegic spinal cord injury and although my right side has sensation and no movement, my left side has sensation but movement," Ms Stephens continued.
"I have extremely sensitive skin, bladder and bowel problems.
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"As it is a hereditary condition my daughter, Peyton, also has the VHL gene, which she will now be under Great Ormond Street Hospital.
"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."
To donate and support the charity Ms Stephens' represents, visit vhl-uk-ireland.org.
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