Family travels in hope of pioneering treatment
ERIK’S SYMPTOMS OF RARE CANCER BEGAN WHEN HE WAS 11
WHEN he was just 11 years old a ‘growing pain’ in Erik Limani’s back changed his life forever.
His GP initially diagnosed the pain as a muscle tear, a month later a second diagnosis said the same, but the pain never went away.
Two years later the once highly active Uxbridge boy is at a hospital in Turkey under experimental cancer treatment after his family were told by doctors there were no more options for him in the UK.
Erik has gone through two years of urgent treatment and his family are in Turkey with him in the hope that experimental treatments will help him recover from the disease.
Erik’s mum, Eni Limani, 47, said: “No words could describe the rollercoaster we’ve been through. It hurts even more to think about what Erik is going through. I often forget he is only 13.
“[His diagnosis] was our worst nightmare coming to life.”
In April 2019 Erik was diagnosed with Ewing’s Sarcoma, a rare form of cancer in the bones and the surrounding soft tissue. A 6cm tumour, the size of a tennis ball, was going through his eighth rib. Before long it spread to his lungs.
A long series of treatments followed. The cancer required chemotherapy, surgery, radiotherapy, and proton beam therapy.
From May 2019 he began chemotherapy completing 14 cycles at University College London Hospital, reducing the size of the primary tumour by 90 per cent.
Following the success of the chemotherapy Erik had an operation at Great Ormond Street where three of his ribs and part of his vertebrae were removed.
With the primary tumour removed and only a small nodule left on his lung Erik looked to be improving. He was given two weeks of whole lung irradiation and four weeks of proton beam therapy in Manchester to treat the remaining problems.
“We thought we were going to have the perfect result,” explains Eni.
But matters got worse. In April 2020 Erik a CT scan produced shattering results, once again leaving his family in pieces.
The nodule had grown in his right lung and spread to his liver. Once again he was forced to undergo chemotherapy in May but unlike the first time the treatment did not work. Although the treatment helped heal Erik’s liver and lungs it did not help his bones. Heartbreakingly Erik’s parents were told there were no other options in the UK after a trial at MacMillan Hospital - making the trip to Turkey a last chance option.
“Because of Covid we could not go to the United States. We had just one option left,” his mum added.
“After speaking to the doctor in Ankara Hospital [in Turkey], who offered us a high-intensive chemotherapy with a combination of five medicines, we took a flight the next day.”
The family arrived on the evening of Saturday, August 30 and went straight to the hospital.
Since arriving in Turkey Erik has undergone targeted immunotherapy and chemotherapy but to add to his struggles the cancer has become drug resistant.
With the family mostly stuck in the hospital, Erik has been entertaining himself by playing with his 18-yearold brother Patrik, who is studying for his A Levels, or playing computer games.
Initially the family had planned to go back and forth from Turkey, allowing Erik’s father Laurence Limani, 55, to keep working for a removal company.
But due to the pandemic the family can not travel or work instead relying on support from family and friends.
So far a GoFundMe page set up by Eni has raised over £59,000 with all of the money going towards Erik’s treatment costs.
“You need to try,” adds Eni. “You have to fight until you have exhausted all the options.”