Bedford man 'living on borrowed time' after a brain tumour diagnosis at just 29 is backing a campaign for more research funding
The former drag queen who shared a post surgery self portrait is among thousands of patients and families demanding action on brain tumour research
The Level Up and Stop the Devastation petition report - being presented to MPs today (Thursday, April 15) - is calling for parity of funding with other cancers such as breast and leukaemia.
Edward was living in Brighton and forging a career as a drag queen when he was diagnosed with a grade three anaplastic astrocytoma in 2017 at the age of 29.
He was given a prognosis of three to five years and now feels he is living on borrowed time. A life-threatening infection following an awake craniotomy meant further surgery to remove part of his skull, leaving his head misshapen.
Edward also has permanent hair loss as a result of treatment. He chose not to continue with a punishing chemotherapy regime and created this stunning self-portrait capturing his appearance post-surgery.
He said: "It seems so brutal that, in a world in which we have achieved so many things, the only treatment for brain cancer is to cut it out by surgery, burn it with radiation and poison it with chemotherapy.
“With such a limited life expectancy, why would I waste any of that precious time putting myself through more horrific treatment for the sake of a few more months?
"Some days it’s as much as I can do to get out of bed and that seems pitiful for a 33-year-old man at what should be the prime of my life.
"My brain tumour has robbed me of my career, my prospects and, ultimately, it will rob me of my life.”
His mother Julie Ruggiero added: "My beloved son Edward took this self-portrait some two years after he had surgery to remove a grade three anaplastic astrocytoma followed by another operation to remove part of his skull because of a life-threatening infection.
"I think the picture really captures who he is; a strikingly beautiful, vulnerable, yet brave young man. I am so very proud of him and the decisions he has made."
A promising career cut short as a drag queen - coming third in a pilot of what was to become Ru Paul’s Drag Race - Edward needed surgery following a seizure.
Julie added: "Edward’s father and I whiled away the hours while he had the procedure, an awake craniotomy. He was conscious for part of the operation so the surgeon could determine how Edward’s cognition and motor skills were affected as they cut away tissue.
"Apparently, Edward had the theatre staff in hysterics, typical.
"Back home with me in Bedfordshire, he recovered well but it was an awful blow to find out that the tumour was in fact high-grade and the prognosis was as little as three to five years.
"Worse was to come; two weeks after the operation Edward was violently sick because of an infection. He was back in surgery, this time to have a section of bone removed and his brain washed out with peroxide. The procedure left him with a large crater in his head and permanent hair loss."
It was then that Edward decided not continue with treatment as he would rather live his life and take his chances.
Julie added: "It seems so unfair that brain tumours kill more people under 40 than any other cancer. How can it be that there are so few treatments? They cut them out with surgery, burn them with radiation and then poison them with chemotherapy. Underneath all of this there is a human being like my son. The treatment is barbaric and brutal and that is so, so unfair."