At first glance, Hope Jeffcoat seems to be an ordinary healthy little girl who enjoys running around and playing with her little brother.

But she is actually suffering from a condition so rare, it is believed to affect only one in 20 million children her age.

She was also one of the youngest people in the world to be diagnosed.

There is no cure and the best doctors can do is provide medication that can manage the symptoms.

Hope's parents Karen and Neil may not know what is going to happen with their little girl in the future but they are determined to give her as normal a life as possible.

Hope, now five, has a form of vasculitis, called polyarteritis nodosa, an inflammation of the blood vessels which chokes off the blood supply to major organs like the kidneys or the gut.

She also suffers from juvenile systemic arthritis, which can lead to fever, pain, and general debilitation.

Mrs Jeffcoat, 42, of Egmont Road, Hove, says her daughter had been a late developer but the problems really started to emerge when she was aged two.

After falling and breaking her leg, she ended up in hospital for six weeks and constantly seemed to be having accidents and suffering ear infections.

Hope's doctors kept saying she was suffering from a virus but as the weeks passed, the situation did not improve until Mrs Jeffcoat insisted on a blood test.

Over the next few weeks Hope was subjected to numerous tests both at the Royal Alexandra Children's Hospital in Brighton and then Great Ormond Street Hospital in London.

The arthritis was diagnosed quickly but doctors knew there was something more serious going on and the vasculitis was diagnosed.

She is now using medication which helps control the vasculitis but has to go for tests every six weeks to make sure her condition does not deteriorate.

The family have had a lot of support from Hope's school, Aldrington Primary, along with charities including Leo House, which helps provide respite care to give Mrs Jeffcoat and her husband Neil, 35, a much needed break and spend more time with younger son Jeremiah, two.

A spokeswoman for Arthritis Research said: “It is exceptionally rare for a child to have this type of vasculitis. Having that form of arthritis is also rare so Hope has a lot to deal with.

“We are currently investing in research to improve treatment.”