A father and son have been diagnosed with the same rare type of tumour.
Nathan Lewis and his three-year-old son Thiago, of Deighton, both have a rare condition called neurofibromatosis type 1 (NF1), a condition that causes tumours to grow.
And for dad-of-two Nathan his only hope of being cured lies in America or Prague.
But the 30-year-old faces a massive hurdle as the NHS has told him he’s likely to be rejected for funding for treatment abroad.
Nathan, a support worker for adults with learning disabilities, said: “The NHS feels there is nothing they can do, we’ve asked about funding but they tell us I don’t meet the criteria.
“But they do send patients from the NHS to America for this treatment, so how can it be untreatable?
“I feel like this is hanging over us.”
In 2011 doctors partially removed a tumour from Nathan’s neck. Since his operation the tumour slowly grown back.
Then in 2015 toddler Thiago was diagnosed with plexiform neurofibromas in his leg which has caused his entire left leg to grow out of proportion.
Mum Tiffany, a maternity support worker, and mum to the couple’s daughter Sienna, aged five, said: “It was when he was one and a half that we noticed Thiago had one leg longer than the other.
“He was checked and they found a tumour in his legs.
“It’s not as simple as ‘abc’ to take them out but he’s monitored about every six months.
“Because they are benign there isn’t any plan to remove them, but they are close to his spinal cord so needs monitoring every six months.”
It was while Thiago was being seen by a consultant that Nathan’s tumour was spotted once again and he was sent for tests.
Three days before his 30th birthday he was told his tumours were cancerous. Doctors said it is inoperable and that the type of condition does not respond well to chemotherapy and radiotherapy.
Nathan chose to have radiotherapy to control the pain and it has shrunk the tumour.
But doctors say the condition is not curable and have ruled out further surgery in the UK because they don’t think it will shrink enough.
The family have made contact with an American doctor who is willing to take on his case.
The family have set about fundraising to self-fund proton beam therapy and expect to need to raise more than £75,000.
For little Thiago, the tumours are not cancerous and his family remain hopeful. He has specially-adapted shoes so he can walk and it doesn’t hold him back, he attends and enjoys Nursery Rhymes Pre-school.
The family have set up a fundraising page where donations can be made: www.gofundme.com/2tbna78