Ruben was the final addition to our family to make it complete...

After recovering from a dreadful labour it was time to bond and get to know my beautiful little boy. At first I noticed in hospital that Ruben was not opening his eye,s and when he did so it was just the one! Ruben was also reluctant to open his tightly clenched fists.

Whilst I was recovering in hospital the Paediatric Doctor came to carry out Ruben,s development check. I expressed that i was concerned with the fact that he did not want to open his eye,s and he told me that he was just simply being lazy!

The following weeks i began to take more notice with Rubens eye movements, Also family members and freinds commented on Rubens erratic eye movement which at the time was put down to having wind!!

By about 6 weeks I noticed that Ruben was not focusing or following me with his eyes. I was concerned however felt that I needed to give him time to develop.

My mother then passed remarks about Ruben's eyes not focusing and that was all I needed to get onto my health visitor. I called my health visitor and explained my concerns to be told that I needed to calm down and give him chance.

I then attended the surgery for Ruben's 8 week development check and all was good with the checks,including his eye's. Two weeks later I was still concerned and had drove myself mad looking into babies develoment. I went back to the doctors and had Ruben referred to the eye department at our local children's hospital.

Both myself and Rob thought we were wasting their time but to our despair was to be told the devastating news that Ruben had severe abnormalities to his retina's.

This spiraled out of our hands and Ruben was then seen by many Health professionals including a neurologist who was keen to know about his development and wanting to carry out tests including MRI scans, blood tests, etc.

This news was absolutely devastating and was hard to take in and comprehend what was being said and suggested. Over a period of 5 months we received several letters suggesting certain syndromes and diseases of which were horrendous and unbearable to even think about.

This in itself was very stressful and all the family was grieving about the unknown. At 7 months of age Ruben was referred by an emotional plea to my GP to eye specialist Professor Moore at Moorfields eye hospital whom then confirmed that Ruben had LCA.

We were devastated, however feel relieved that Ruben has none of the other syndromes or diseases mentioned and feel that we are lucky to have Ruben fit and healthy. We will continue to research this rare condition and hope that new developments will one day be able to benefit Ruben.