THE dad and grandmother of a boy diagnosed with an incurable genetic condition which can cause tumours to grow over the body will jump from a plane to raise money for research.

Ellis Taylor, seven, was by chance diagnosed with neurofibromatosis in November when a paediatrician at Colchester General Hospital spotted the coffee- coloured pigmentation marks known as café au lait spots.

The painless marks of about 5mm are a main symptom of Type 1 neurofibromatosis - a condition caused by a genetic mutation or passed on from parents - which developed into freckling on Ellis’s armpits, neck and groin.

When James and wife Kelly, of Tiptree, found out, they were immediately tested for the gene but neither are carriers.

However, their son will need annual checks for the rest of his life and faces an uncertain future with the condition which can trigger scoliosis and learning difficulties.

Mr Taylor, 42, said: “It’s scary. They tell you not to Google it but you can’t help yourself and it shows you the worst case scenarios.

“One in 3,000 babies are born with it and it’s more common than cystic fibrosis but people don’t understand or know they have it.

“We were in disbelief and wondered why it was happening but there are people worse off than us - that’s how we get through it.

“Ellis doesn’t know about his condition.We don’t know when the right time to tell him would be or if he’d understand at his age, but we’re seeing a specialist from Great Ormond Street Hospital to discuss how to go about it.”

In the meantime, Mr Taylor and his mother-in-law Jenny Jefferson, who lives in Norfolk, are gearing up for a tandem skydive on Saturday with the proceeds being donated to the Neuro Foundation.

At the moment, there is no cure for neurofibromatosis so the pair are facing their worst fears in the hope one day there might be.

Mr Taylor added: “I said I’d never jump out of a plane but while we were waiting for Ellis’s results, I said if he was diagnosed I’d do a skydive, thinking I wouldn’t have to.

“Jenny has a fear of flying so she’s finding it much harder than me right now. I just can’t believe we’re doing it.”

The big jump will take place in Beccles, Norfolk, and so far combined sponsorship from friends, family and St Luke’s Primary School, in Tiptree, where Ellis is a pupil, has raised £2,400.

He added: “I’m over the moon. I never expected to raise so much money.”

To donate to their jump, click here.