Connor Wright (11) was diagnosed with Shwachman-Diamond Syndrome in 2005.

Since then he has been on an intensive course of medication and has to make regular visits to hospital.

The disease affects his bone marrow, and Connor has a dangerously low white blood cell count – the component of the blood which fights infection.

He is one of just 20 people in the country who suffer from the disease.

Connor's aunt Rachel Farrington said: "After raising the money last year, Connor has been used almost as a guinea pig in the research, and the doctors have found a lot out about his blood and his pancreas.

"He is now on a new course of medication and his health has not deteriorated for a long time, which is fantastic news."

To help fund more research, Connor's family has organised an It's A Knockout-style competition on Peterborough's Embankment on Saturday to raise money for the Connor Wright Shwachman-Diamond Project, which is run in conjuction with London's Great Ormond Street Hospital.

There will be music, entertainment and It's a Knockout games.

The headline act will be Leon Lopez, who after starring as Jerome Johnson in Brookside has recently been given the lead role in West End musical Rent.

There are already 12 teams booked for the competition, but it is hoped that more will enter before the day.

Anyone interested in entering the competition should call Mrs Farrington on 07944 939740.