EVERY parent thinks their child is extra special but little Daniel Barnes really is one in a million.

Like any typical four-year-old he is full of energy and loves sports including football, rugby and swimming.

Daniel, a keen Brighton and Hove Albion fan, touched the hearts of thousands of football fans when he appeared as a mascot at the club’s home ground at Falmer against Wolves.

The youngster, from Patcham, Brighton, faces an uncertain future. He has a condition which is so rare, there are only about 1,000 known cases in the world and less than 100 in the UK.

Alkaptonuria (AKU) also known as Black Bone Disease, is a genetic condition which causes severe early-onset osteoarthritis.

It is caused by a build-up of acid in the body which attacks bones and other tissue, turning it black and brittle. There is currently no cure for the condition.

At the moment Daniel has no symptoms apart from his urine, which turns black.

However as he grows up, his bones and cartilage could be attacked by the disease, he will have problems with his joints and there is a chance he will end up having to use a wheelchair.

The condition can also affect vital organs and lead to other issues such as heart disease, kidney stones, bladder conditions and breathing issues.

Daniel’s mother Jessica, 39, said: “Hearing that your child has a rare disease is an awful thing to deal with and initially, when we got the diagnosis, we were devastated by the news and very scared about what this would mean for our little boy.

“Hearing there was no current cure only added to our anxiety.

“We’d never heard of the condition before and quite honestly, a lot of doctors haven’t heard of it either. It really is rare. It certainly makes Daniel one in a million.”

But hope then came for the family when they were put in contact with the awareness and support charity the AKU Society.

They discovered a clinical trial was underway and a drug originally developed as a weed killer was showing some very positive results in stemming the development of the disease.

Mrs Barnes said: “It is still early days but the early signs are extremely promising.”

The drug, called nitisinone is showing it can block the high levels of acidity affecting the bones, helping to prevent most of the symptoms and the onset of osteoarthritis. The question now is discovering the right age for people to start taking the drug.

Mrs Barnes is backing a crowdfunding campaign aimed at raising the money needed for a study to discover that age.

She said: “In general people with the condition start out ok. Acidity levels build up in children but they expel it through their urine.

"However at some stage everything suddenly switches and the bones and joints start to get attacked.

"The aim of the study is to find out when that happens and when people should start taking the drug.

"There is still lots to do but we’re very positive that a cure will be found in time to prevent the onset of such an awful disease.”