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.