Kotupanova said an oncologist told the single mom that she has up to one year to live with treatment.
A single mom is in a race against time to teach her toddler all the life lessons he might need, before she falls victim to an ultra-rare form of cancer.
Ornela Kotupanova, 30, is reportedly one of only 77 people to have been diagnosed with the rare sinus cancer – and only the second to have had the grim prognosis under the age of 35.
She believes she may only be the second person under 35 to be diagnosed with stage T4 M0 Neuroendocrine Maxillary Sinus Carcinoma Cancer, since it was discovered in 1965.
“A friend who is a doctor read this study and told me I seem to be the 77th person in the world to be diagnosed with the disease,” Kotupanova, of Caterham, Surrey, said. “The same study says I am in the two percent of people that have been diagnosed with this under the age of 35.”
Kotupanova, who also goes by her artist name Ornella Sole, thought she had beaten the rare form of sinus cancer in 2015 and became pregnant with son Luca Jeffrey just two months after being given the all-clear.
“The doctors said they don’t have any patients like me in the country,” the former interior designer said. “It was quite ‘experimental’ treatment, as they put it. They said they can try things that affect the same cancer cells but they didn’t know how it was going to react.”
Three years after beating cancer, she was told that bone cancer has spread to her legs, hips and lower back.
She was diagnosed with T4 M1 neuroendocrine carcinoma metastasis bone cancer last month, and sadly the outcome does not look good.
The single mom she often bursts into tears as the pain in her back and legs stops her playing with her 20-month-old son.
“I had been telling doctors for the last year that I had been struggling with pain,” Kotupanova, who is originally from Bulgaria, said. “It’s like a gut feeling that it’s the same sort of thing that I had before. They said it was from giving birth and a trapped nerve.”
“It was November last year when I asked my oncology team for a scan,” she said. “I kept collapsing from pain. It’s everytime I lift Luca or bend over. He begs and asks me to play. I burst into tears because I cant do the things I used to do with him. It gets worse and worse. It’s sad to think you can’t be 100 percent with your child.”
Kotupanova said she had an X-ray and then an MRI before the worst was confirmed.
An oncologist told her the cancer is too aggressive and advanced to be cured and she has six to nine months to live, or up to a year with treatment.
She has been recommended palliative care and pain management.
“Being a single mother to a toddler in a foreign country with no family is hard, but knowing that you might not be around your boy and see him grow breaks my heart every time I cuddle him, every time he smiles,” she said. “I never thought that I would be 30 years old and have to write my own will and decide who to be the guardian of my little Luca. I keep waiting to wake up from this horrible nightmare.”
“I want more than everything to see my son grow up, hear him say, mama, teach him to play basketball, teach him to draw, play the piano, take him to gigs, travel the world, see him fall in love, see him become a father and so much more,” she said. “The truth is I desperately want to live. Knowing that I might die and he won’t even remember me – it’s the worst pain I have ever experienced.”
She is now raising money to undergo further treatment in Germany to prolong her life for her son.
She has reached out to private oncology centre the Hallwang Clinic after seeing campaigns and posts from other patients.
Due to an allergy to chemotherapy treatment, Kotupanova said she may turn down the offer of fresh cycles of the treatment to extend her life for another three months.
“It’s hard to accept the result,” she said. “I believe the NHS should be able to offer those kinds of treatments to those patients even at some cost. There should be more options than chemotherapy and radiotherapy. It is what it is. Either you fight it and try to think positively or you get down and get depressed.”
The clinic in Germany offers alternative medicine including immune therapy vaccines and antibody treatments at a cost of £120,000. She needs 80 percent of the total cost of the treatment before doctors can start the treatment.
Kotupanova launched a GoFundMe page to raise money for her treatment.