Mum in race against time to raise £300K to fund clinical trial that could save 2-year-old son’s life

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Adamas Jasinauskas, from Peterborough, was only 14 months old when he was diagnosed with neuroblastoma and now after a relapse and five cycles of chemotherapy his survival hopes are down to a costly clinical trial

A mum has found herself in a terrifying race against time to raise hundreds of thousands of pounds to try and save her toddler son’s life as he battles a deadly form of cancer.

Adamas Jasinauskas is now nearly three, and his mum Egle says that the only hope for him to beat the neuroblastoma is with a clinical trial in Rome where he is currently having test. That means Adamas’ family find themselves in a race against time to secure the £300,000 needed to fund the potentially life-saving treatment.

The youngster from Peterborough was only 14 months when he was diagnosed with neuroblastoma cancer in July 2022, and has been fighting the disease ever since. He has had to endure five cycles of chemotherapy and surgery including 11 hours to remove his left kidney that was wrapped with a tumour.

“He is our blessing and he proves that every single day,” Egle told The Mirror, as she and her husband Robertas Jasinauskas remain positive that he will win his battle with the disease. “Adamas was a healthy baby and we had no concerns whatsoever until one day he started having a fever, became pale and so we contacted our GP.

“Antibiotics were prescribed but once he finished them his temperature spiked. As it was during Covid we were only able to have a video call and antibiotics were given. We also noticed that his stomach looked swollen and so we took him to A&E as we felt something wasn’t right.”

Egle said how medics asked if he had suffered a fall due to an image around his kidney on an ultrasound and it proved to be something more sinister. “They did bloods and used ultrasound on his tummy, they looked at me and then they asked did he fall by any chance, I said no, then they said they can see something around his left kidney,” she continued.

“They kept us overnight in Peterborough hospital and the following day we were sent to Addenbrooke’s hospital in Cambridge.” Further tests, scans and a biopsy were then carried out. “All the results came back saying it’s neuroblastoma,” said Egle. Adamas began chemotherapy straight away and had surgery to remove the kidney in November, 2022.

But unfortunately some of the cancerous cells couldn’t be removed and further scans in January 2023 showed that the tumour was growing back. Since then little Adamas has had to suffer an arduous journey of treatment.

“We started 2023 with very intense treatment, numerous rounds of chemo, stem cell transplant,” she said. “And there were high doses of chemo, radiotherapy, immunotherapy… but during immunotherapy Adamas had another routine scan, and sadly it showed that it’s coming back again, he had another surgery to remove the mass that grew back.”

The family then found themselves in a situation where the hospital could only offer treatment to “manage” the cancer. But through their own research and that of a consultant they found out about a trial in Rome for relapsed neuroblastoma and they are currently trying to find the funds to cover the £300,000 needed for the treatment.

“The hospital can only offer us chemotherapy that can manage it but it won’t cure it. With help from our consultant we did a lot of research and found this treatment, CAR-T, in Italy that has really good results with relapsed neuroblastoma. Unfortunately it’s not funded in the UK since it left the EU and all treatment abroad needs to be covered by the patient.

“The price of the treatment is £300,000 so far we’ve raised £210,000 and luckily the hospital in Rome agreed on us paying for a treatment in phases, so Adamas started his first phase of the treatment on 8th of April.”

The situation has obviously put a great stress on the family with the day-to-day impact as well as the emotional strain and they are appealing for help to cover the costs of the treatment. “Before Adamas was diagnosed we both worked full time as many family do, and just worked our way around our little one, but once everything happened I had to stop working completely,” she said.

“My husband still works full time, but needs a lot of time off to help with Adamas treatment. Family and friends help us in every way they can and we are very grateful for that. To help with a funding for the treatment we set a GoFundMe page, we got influencers, TikTokers involved, lots of famous basketball players, artists helping us as well. Adamas got his Facebook page where everyone can see how we are doing, but mostly it is ordinary people with a good hearts that feels indifference to our family’s situation.

Mirror readers can support Adamas’ fundraiser here.

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