A YOUNG Crombie boy is battling against a disease which affects just one in 200,000 people.

Noah Mitchell, six, was just two when lumps were found and removed on his tonsils.

Similar growths followed on his back and stomach and blood tests revealed months later that he had PTEN Hamartoma Tumour Syndrome, otherwise known as Cowden syndrome.

“It came as a bolt out of the blue,” said mum Liza. “It normally comes from a parent but we don’t have it. He has 85 per cent chance of one of the lumps being cancerous. When he is 16, he will have to have regular appointments.”

The devastating news came around the same time as Liza and husband Craig, of Farm Road, had begun to have concerns about Noah’s development.

They then discovered that these worries could be connected with the disease.

“Many children with PTEN have neurodevelopmental conditions, such as autism. Many have challenges with mental processing speed and working memory; they struggle with rapidly processing incoming information and then holding that information in their mind long enough to guide their actions.”

With only a small information leaflet after the diagnosis, the family struggled to find out more and, with national PTEN awareness month taking place this month, Liza is keen to raise the profile of the disease.

“We were in disbelief how little information and knowledge there was,” said Liza. “We could not find any books on PTEN so had to work with Noah’s symptoms and buy books I thought would help us understand our son’s condition.”

Life with Noah – and his three sisters – has presented challenges. He struggles with breaks from routine and, although coping since starting school in August, life is becoming more difficult at home.

The family is currently attempting to appeal a decision which turned down an application for Disability Living Allowance (DLA).

“We thought long and hard about applying for DLA for Noah but after taking advice from experienced people, we did apply, thinking its what’s best for Noah and for us to meet his needs. We do have a challenging time with Noah, especially in a busy family-of-six household – Noah has an impact on how everyone else’s mood is.

“We feel that if doctors don’t have much knowledge about PTEN, how are teachers and assessors for DLA to gain this knowledge to support us and our son? I do understand that they don’t see it, but we do and we just want people to listen and help us meet the needs of our son as he grows.”