'Not all illnesses are visible' says campaigning Wisbech mum who fought to raise awareness of 'brittle bone disease'
A Wisbech woman who spent nearly three decades campaigning to raise awareness of a rare disease which has seen families robbed of their children has spoken out on National Rare Illness Day.
Rosemary Ladeji, who has ostogensis imperfecta (better known as brittle bone disease), posted about the condition on Facebook and said not all illnesses are visible, pointing out that she looks the "picture of health".
However, Rosemary, who inherited the condition from her dad and has passed it on to both her son and daughter, is in pain virtually everyday and not all of it is physical.
She was not diagnosed with the illness until she was well in her 30s when her son Jordan was just six weeks old and in hospital with a major fracture to his thigh bone.
Rosemary said: "It was a living nightmare. I was asked if Jordan had been dropped or banged against anything after a full body x-ray showed he had 17 fractures. The doctors put the fractures down as 'non accidental injury' and I had no explanation as to how they had happened. I found myself in a room being questioned by social services and it suddenly dawned on me they thought I had injured my son.
"They were just about to put in an emergency protection order to take my children from me when the nurse who had been looking after Jordan suddenly noticed his eyes were a funny colour. Some with osteogenesis imperfecta have blue coloured whites to their eyes.
"It was a stroke of luck as she immediately recognised the symptom and soon after that Jordan was diagnosed with osteogenesis imperfecta. If it had not been for that nurse, then I would have lost my children. I still have nightmares about it."
Rosemary was also diagnosed with the condition which is genetic, with parents with the condition having a 50/50 chance of passing it on to their children.
Rosemary had no idea she had the condition despite suffering multiple broken bones growing up and has suffered more than 35 in her lifetime.
She said: "My dad had the condition, but was never tested and would not accept he had it even after me and Jordan were diagnosed. His mum also had it. But I had no idea and I had a very active childhood, horse riding, roller skating, ice skating and even boxing.
"I only have a mild type of the disease and so does my daughter and grandson, but Jordan is more severe. He has had over 400 fractures - 75 of them in one year, which was just horrendous.
"He is badly affected by the condition and can only walk short distances. He is in constant bone pain.
"We are lucky, I managed to keep my children but when I started looking into it there was just one paragraph about the condition in the medical encyclopedia. Doctors had very little awareness of the condition and I found there were other parents who were being falsely accused of hurting their babies."
As a result in 1994 Rosemary and her friend Maggie Eaton from Preston, (who has since died) set up a support group - The Eaton Foundation - under the umbrella of the Brittle Bone Society.
They have helped dozens of families to keep their children, but Rosemary said she is still haunted by those cases they lost.
She said: "Obviously it is a very emotive subject, there are over 200 conditions that mimic child abuse. It is very difficult to test a young infant for all those conditions and of course there are cases that are the result of abuse, so it is a difficult line to walk.
"The problem lies with the medical profession and their use of language. 'Non accidental injury', suggests it was caused deliberately. Our group fought to get guidelines on child mal-treatment introduced into hospitals.
"All we ask is that doctors consider all the possibilities and use words like 'unexplained' which does not automatically suggest deliberate when diagnosing the cause of injuries. The trouble is when a child is taken into care for abuse it is very difficult to get them back.
"Social services have to act and if they are being told a child has suffered a 'non accidental injury' they cannot leave it in harms way. We have tried to help families who have eventually lost their children to adoption only for a diagnosis to come later. Then it is too late as there is no way to undo an adoption.
"Those cases still haunt me. I suffer physical pain with my condition, but the mental trauma is still there too. It never goes away. I want people to understand there are lots of rare conditions out there which people suffer every day, not all of them are obvious."