When Bekki Burns sees photographs of her five-year-old son Daniel and three-year-old daughter Holly showering their little brother with love she is acutely aware of how treasured these snapshots will become. For she knows that there may be a time when they will struggle to recall the moments they shared with baby Campbell.

“It’s so touching to see them with Campbell, they just love him so much. They cuddle him as much as they can and play with him and Daniel leaves little letters for him in his cot. It makes us sad because we know they won’t remember a lot but we are trying hard to build memories for them, special days with Campbell that they can cherish,” says Bekki, a research secretary at the University.

Campbell was born on 24 January this year, the day before Burns Night — to the delight of Scottish dad Mark — after a trouble-free pregnancy. At 6lbs 6ozs he was a bit smaller than his siblings had been but otherwise seemed healthy.

The earliest hint of the heartbreaking diagnosis to come was at Campbell’s seven-week check when it was noticed that he was a little weak in muscle tone and wasn’t yet smiling. No reason to panic, said the doctor, a chest infection had probably slowed his progress.

A week later, Campbell was back at the doctor’s for his immunisations. The routine visit spiralled into an emergency when Campbell had a seizure. He was referred to Burton Hospital, near the family’s home in Coalville, Leicestershire, where high lactic acids in his blood suggested a metabolic condition. Doctors began to talk in terrifying terms like ‘life-limiting’ and Campbell was transferred to specialists at Birmingham Children’s Hospital.

At just nine weeks old Campbell’s diagnosis was confirmed — the extremely rare and incurable genetic condition Leigh’s Disease — and his parents were given the devastating news that their little boy would be unlikely to live to his first birthday.

Bekki said: “Mark and I both had a feeling of foreboding pretty early on but obviously it was still a huge shock.

“Our main concern was really for our other children. They had only recently welcomed their baby brother and were absolutely delighted with him. We worried about how we were going to tell them but children sense when something is wrong and in the end we decided to be as honest as we could be.

“Holly is still too little to comprehend the enormity of it but Daniel understood exactly what it meant, he just screamed and screamed. After he’d calmed down he ran straight upstairs to fetch his Buzz Lightyear camera. He told us, ‘If Campbell is not going to be with us for very long then we need to take lots of photos.’”

Leigh’s Disease is a rare inherited disorder caused by problems in the mitochondria — the tiny ‘power stations’ of the body’s cells. It affects the central nervous system, causing progressive degeneration of motor functions. The diagnosis came out of the blue; with no history of metabolic disease in the family, specialists at Birmingham are carrying out complex tests to unravel the genetic riddle.

For now though, the Burns family are focusing firmly on the future. Their blog — www.campbellburns.wordpress.com — launched to record their precious time with Campbell has had more than 20,000 hits and comments from around the globe.

The family has launched the Campbell Burns Metabolic Trust to support East Midlands’ families whose under-twos have been diagnosed with a metabolic disorder.

Bekki said: “We wanted to do something in Campbell’s name that would offer practical help to people in a similar position to us. We will aim to give financial assistance with things like accommodation and parking for extended hospital stays, anything that will just take some of that worry away during a very stressful time. We will also fund special memory-making day trips out for families, which can also prove to be very costly.”

Money has been rolling in to the charity via auctions on the blog, a sponsored Toddler Walk at Holly’s nursery and a sponsored Ironman Challenge by a friend. Rugby player Joe Gray, son of University staff member Lesley Gray, has donated signed Harlequins and England shirts, and is the charity’s patron. And a cake sale organised by Bekki’s colleagues in the School of Electrical and Electronic Engineering raised £350 for Rainbows Hospice.

Bekki added: “There is no immediate sense that Campbell is unwell which is what is so shocking about all this. However, we have been told that his condition could change almost overnight. His body has a problem with producing energy so if he develops an infection he has to divert energy to fight that meaning that he could very quickly lose another function, for example, the ability to swallow.

“It’s difficult to make long-term plans but we don’t want to live in a bubble and want to give Campbell a good quality of life wherever we can. We are determined to enjoy every day and to make the most of the time we do have with our beautiful boy.”

Details of how to support The Campbell Burns Metabolic Trust is available at: www.campbellstrust.co.uk. You can also follow the charity on Twitter: @CampbellsTrust and on Facebook at: www.facebook.com/TheCampbellBurnsMetabolicTrust.