Bedford man Edward Ruggiero, 33, put his weight behind a petition from Brain Tumor Research calling for more investment in a cure.
The Level Up and Stop the Devastation petition report – presented to MPs today (Thursday, April 15) – calls for funding parity with other cancers such as breast and leukemia.
Edward was living in Brighton and was building a career as a drag queen when he was diagnosed with third year 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 with borrowed time. A life-threatening infection from an awake craniotomy meant further surgery to remove part of his skull, leaving his head deformed.
Edward also has permanent hair loss as a result of the treatment. He chose not to continue with a punitive chemotherapy regimen and created this stunning self portrait capturing his appearance after surgery.
He said: “It sounds so brutal that in a world where we have accomplished so much, the only treatment for brain cancer is to cut it off with surgery, burn it with radiation and poison it with chemotherapy. .
“With such a limited life expectancy, why would I waste some of this precious time undergoing more horrible treatment for a few more months?”
“Some days it’s all I can do to wake up and it seems pathetic for a 33 year old man in what should be the prime of my life.
“My brain tumor robbed me of my career, of my prospects, and in the end, it will rob me of my life.”
His mother, Julie Ruggiero, added: “My beloved son Edward took this self portrait about two years after undergoing surgery to remove a grade three anaplastic astrocytoma, followed by another operation to remove part of his. skull from a life-threatening infection.
“I think the picture really shows who he is; a strikingly handsome young man, vulnerable, but courageous. I’m so proud of him and the decisions he made.”
A promising career cut short as a drag queen – third in a pilot in what would become Ru Paul’s Drag Race – Edward needed surgery following a seizure.
Julie added, “Edward’s father and I spent the hours while he had the procedure, an awake craniotomy. He was conscious for part of the operation so the surgeon could determine how cognition and motor skills were of Edward were affected as they cut the fabrics.
“Apparently Edward had the theater staff in hysteria, typical.
“Back home with me in Bedfordshire he made a good recovery, but it was a terrible blow to find out that the tumor was actually high grade and the prognosis was only three to five years.
“The worst was yet to come; two weeks after the operation, Edward was severely ill from an infection. He was back in surgery, this time to have a section of bone removed and his brain washed with peroxide. crater in his head and permanent hair loss. “
It was then that Edward decided not to continue the treatment as he preferred to live his life and try his luck.
Julie added: “It seems so unfair that brain tumors kill more people under the age of 40 than any other cancer. How is it that there are so few treatments? They cut them off 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 it is so unfair. “
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Source: www.bedfordtoday.co.uk
This notice was published: 2021-04-15 09:15:15
