AS part of Rare Disease Day the Gazette is sharing the story of a two-year-old from Dursley who has a one in ten million syndrome.

Isaac Mansell has the neurological disorder called Opsoclonus Myoclonus Syndrome (OMS), which was caused by a cancerous tumour which was found in his abdomen on May 4 2016 and removed 13 days later.

This is how 50 per cent of cases are caused, the other half of cases are caused by a virus.

Isaac’s condition has caused his body’s immune system to go into overdrive and produces an response which attacks the brain as well as the tumour.

This has caused the him to lose his ability to perform everyday tasks including walking, talking, eating, sitting and balance.

He often has rapid eye movements and uncontrollable body jerks and tremors – which has been very distressing for his family and loved ones.

His mother Rheanne said: “Isaac is currently doing well and we have managed to get most of his symptoms under control, he has very very mild body tremors when he's angry or frightened/stressed.

“The journey to get him here has been difficult and we are far from the end but looking very hopeful.

“Our aim for Isaac is remission of the OMS. Then we just have to pray and hope that his body is able to respond to everyday illnesses without going crazy and attacking his brain as well.”

OMS is a life-long condition that Isaac will never be rid of completely, but with continued treatment he can regain many of his abilities – he recently walked down the stairs in their Dursley home, a massive achievement.

Isaac turned two in September and didn’t attend pre-school in favour of staying home with father, Charlie, so that Rheanne could work –saving vital money on the large expense of childcare.

Rheanne said: “He is just amazing, even on his darkest and most horrid days, he still manages a smile – just.”

The couple first noticed signs of the syndrome when Isaac began to fall over more regularly than usual – he had been able to walk from 10 months.

He was taken to Cirencester Hospital and then Gloucestershire Royal before being transferred again to Bristol Royal Infirmary on May 2 2016.

A CT scan revealed nothing and a further MRI and lumbar puncture were then scheduled to give a definite answer for Isaac’s symptoms which once suspected to be encephalitis was confirmed as the one in ten million condition, Opsoclonus-Myoclonus Syndrome.

Treatment started immediately for a dose of human immunoglobin, and a week later dose one of 12 of dexamethasone steroids.

Intensive physiotherapy, occupational therapy and speech and language therapies ensued for seven weeks before Isaac was able to be discharged on June 24.

The couple’s second child, Henry was born on June 10 at St Mike’s maternity unit amidst Isaac’s improving recovery.

Isaac is currently undergoing chemotherapy to improve his damaged immune system, though the cancer was halted with the removal of the tumour.