Lily Mae spent 2 weeks in scbu after a difficult birth. Over these weeks she needed help with breathing, ng tube fed, discovered a cataract in her right eye, a cleft palate, low muscle tone to name a few of her difficulties. When she was 2 1/2 weeks old she started to have seizures which to this day àre still a challenge to control and which she suffers from daily. She was diagnosed when 4 years old with cdkl5 which explains the hard to control seizures.
Over the years Lily has had various operations for eyes, cleft, peg/jej tubes, grommets and with future hip/spine operations likely to follow but throughout everything she never complains. She is generally a very happy content girl who is an inspiration to us all.