Thursday, March 19, 2015

On 19th March 2015. The Brighton Argus ran a story about Jess Barnes, and her fight to find a cure for Black Bone Disease for her son, who has the disease.

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.

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.

You can read the full article by clicking here