Lily-Mae weighed 5lbs 7oz when she was born, when the 24hour check was done they noticed she had no red reflex and it turned out she had cataracts, we went to alder hey Liverpool hospital to have the cataract removed from 1 eye when she was 6 weeks old then about 3-4 weeks later went in to have the other eye done.

As Lily was getting older we noticed she wasn't putting as much weight on or growing as she should be, just before Lily turned 1 we had to go stay in hospital for a week so they could monitor her eating, while we were there a lady from the genetics department at Liverpool women's hospital came to see us and mentioned it was a possibility Lily could have cockayne syndrome, they took blood tests so it could be confirmed and it was.

Favourite things about Lily.... I LOVE EVERYTHING ABOUT HER ?? always happy and smiling, so laid back, she is no trouble at all, really good when it's bed time, tries to blow kisses, she is just a little princess and a blessing to have xx



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