Jimmy's story

My son Jimmy was born 14 weeks premature, weighing 704g. During his 129 day hospital stay, he had numerous eye checks and everything appeared to be fine. After a few months of being home, I noticed he was going cross-eyed and started showing signs of nystagmus. I immediately got my GP to refer us to our state children’s hospital to get them checked.

At the appointment, the eye specialist informed me that Jimmy had cataracts, the right eye slightly worse than the left. I was speechless, I thought cataracts were something old people got

​They sent us for further testing to find out what had caused the cataracts but they were pretty sure it was due to Galactosemia – a rare genetic metabolic disorder that affects how the body processes galactose, a sugar found in dairy. After a few months of reviews, it was decided that surgery on his right eye was needed.

The operation took just over an hour and we spent a night at the hospital. He had to wear a plastic patch over his eye and we were told his contact lens could be fitted after one week.

Once we were home we had to put drops in his eyes every two hours, which was made worse by having to remove and stick the eyepatch back on every time. After a week, we were able to get the lens fitted and then the patch could come off, which made putting the drops in a little easier.

The pressure in his eye was a little high so we had more drops to use for a few weeks but this settled and we finally could stop all the drops. He is coping well with the lens and we have to patch his left eye every day for at least 5 hours for a minimum of 6 months. His left eye may need surgery in the future.
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With everything that has been thrown at us, this was just another hurdle which we got past. Jimmy’s shown what a little fighter he is.     Story by Lucy.