Lillia Marie Cluse

Lilli boo our beautiful baby girl. Your big blue eyes would make us melt, each time we cuddled,
each time we played, each time was special. You brought us love for every minute of your life and
you filled everyone you met with joy. Our heart aches without you. You will never be forgotton.
Keep ringing those bells in heaven darling. We miss you bubba girl. Our love will never fade.
Love Mummy, Daddy and your big brothers Lachlan and Rylee xxxxxxxxxxxxx


Lillia was born with an extremely rare condition called Psuedodyastrophic Dysplasia, it was so rare
that she was the 11th known case in the world. This condition is a form of skeletal dysplasia that
affects the bones. We were told throughout my pregnancy that she would not survive and even if she
did she would be a still birth. Showing what a true fighter she was she did survive the pregnancy
and the birth. The older she got the more positive we were that she would live a relatively normal
life. Because of her bone condition there was always a worry that her ribs would not grow at the
same rate as the rest of her, thus meaning her lungs would not be able to grow to sustain life. But
she seemed to improve in regards to her breathing as she got older so we didn't think this would
become an issue. So positive we were about it that we were organising for her to come home. (She
had spent all of her 9 months in intensive care). In fact on the friday afternoon I was going
through her discharge plan with the nurse unit manager. I didn't believe, therefore, the phone call
I got just after midnight that night. I was told that Lillia had gone into respiratory arrest and
the doctors were performing CPR. I was staying at Ronald McDonald House so I ran the 5 minutes it
took me to get to her. Luckily they had got her back by the time I got there. She had another
arrest on the Sunday morning. At first we thought this was a result from a virus but an echo showed
that she was suffering severe pulmonary hypertension (her heart was working too hard because her
lungs were too small). Our worst fear had come true - her ribs were too small for her lungs. The
doctors had to tell us the dreadful news that there was nothing they could do - Lillia was not going
to come off life support. We were devestated. To think we would never play with her, cuddle her,
or hear her beautiful voice again. The agony of never being able to see her grow into a beautiful
girl or woman was unbearable and still is. After processing all this there was one last wish we
wanted and that was to bring her home. With much organising the hospital granted us our wish a week
later (even though this was only the 2nd time a ventilated child had gone home). Our 2 beautiful
primary care nurses and doctor came with us to spend our last precious day with our princess. We
played with her on the floor, we gave her a bath (something she loved so much) and then we gave her
lots of cuddles before the painful time came for her to join the angels in heaven. She passed
peacefully in my arms. She gave us so much in her too short life; joy, love, patience and most of
all beautiful memories. Many memories including; her smiling episodes (where she would smile on and
off continuously for about 15 minutes), the games she would play in her mirror with us, playing on
the floor and keeping an eye on everyone in the ward, playing with her many many toys, the colour
pink (her area was known as the pink corner as everything was pink), her many trips outside
including to the zoo and various cafes with nurses throughout North Adelaide, talking to anyone who
would listen (though it wasn't always pleasant, she was known to tell the doctors and nurses off
when she wasn't happy with what they were doing with her), playing and talking to her next door
neighbour and best friend Ava and her mum and dad, and of course her bells that she loved to make
noise and music with that were always attached to her arms. But the thing we will remember most and
miss is her gorgeous personality. She was one of the most happiest babies even though she had
plenty to complain about - she very rarely grizzled. Her beautiful personality is why everyone
loved her. My beautiful, beautiful girl, I miss you so much it hurts. Just know I will never let
your memory fade you will always hold a special place in my heart forever. Heaven is such a lucky
place to have you in it.



We have set up a memorial fund for Lillia with all proceeds going to the Paediatric Intensive Care
Unit of the Women's And Children's Hospital in Adelaide, South Australia. If you would like more
details you can go to a facebook page I have made called Lillia Cluse Memorial Fund. Thank you xx