This is Lily-Maes journey so far.

Lily-Mae was born on 3rd march 2016 weighing 5lb 7oz she descided she had had enough of being tucked up all nice and warm and descided she wanted to make a very quick appearance Lily was born with cateracts we was told we would never know the reasons for this Lily-Mae had various blood tests done to try and find the cause of them but everything was coming back clear lily had the cataracts removed when she was approx 6 wks old Lily was diagnosed with cockayne syndrome when she was just under a year old through a genetic blood test lily was not meeting her mile stones so it was agreed the genetic blood test was the way forward.
Since being diagnosed Lily-Mae has overcome many hurdles she had a feeding ped fitted as some days she will be a little diva and wont open her mouth unless its for chocolate or milkshakes the feeding peg is used as a back up but just recently it is being used more as Lily-Mae is refusing food more often now.

Lily amazes us every day she is a happy little girl and always has a smild for everybody apart from the drs then her scowl comes out.

Lily-Mae is our little perfect princess and brings so much joy and happiness in to our lives everybody who she meets she has them wrapped around her little finger with her gorgeous smile she is a little ray of sunshine.



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