Connor Wright (11), of Crowland, has Shwachman-Diamond Syndrome and is undergoing an operation in a couple of weeks' time which will help doctors understand why his bone marrow is not producing enough healthy, white, infection-fighting cells.

Three years ago Connor's family launched a campaign to fund medical research and last year alone raised £10,000 for the Great Ormond Street Children's Charity through parachute jumps, sponsored bike rides, a ball and an It's a Knockout contest.

Connor's grandmother Sue Kilby said the family is delighted with its efforts but is keen to raise the profile of the condition and get more support.

She said: "We are very pleased, especially since there's only a handful of us. Everybody has been very supportive.

"Connor is suffering with his blood at the moment. He's not got a good white count.

"They are going to do a bone marrow aspirate on him, which means they will remove some bone marrow from his hip to carry out extensive tests on.

"It's a crucial time for Connor. This is why we need to carry on doing what we are doing and raising money for research.

"Every penny we raise goes into the research pot."

Connor's parents Amanda and Paul became aware something was wrong with Connor shortly after he was born but spent many years trying to get a diagnosis.

The youngster has to take up to 30 enzyme pills a day to help his food digest properly and a daily antibiotic to stave off infections because a common cold can lead to a three-week hospital stay for him.

Connor's family is planning a third charity ball in November and is appealing for sponsors and people to donate auction gifts and prizes. An It's a Knockout event could also be repeated if enough teams come forward.

Anyone who wants to help or support the fund can contact Sue on 07894253931.