| Location | Eudunda, South Australia |
| Age | 9 months |
| Cause of Death | Genetic Condition |
| Date of Birth | 19/08/2008 |
| Date of Death | 27/05/2009 |
| Visitors | 2,731 since 02/07/2009 |
| Creator |
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
Remembrance
Remembrance is a golden chain
Death tries to break,
but all in vain.
To have, to love, and then to part
Is the greatest sorrow of one's heart.
The years may wipe out many things
But some they wipe out never.
Like memories of those happy times
When we were all together.
Authur Unknown
lillia
God bless you and watch over you in place of your mother and father. No one knows how much of an impact a baby is in their lives until its about to be taken from them. I feel for your mother and father, and i pray that someday you and them meet again, that it will be nothing but happiness for your family and past friends. god bless all who endure this kind of pain.
♥ღ♥ I lit a candle tonight, in honor of you
Remembering your life, and all the times we'd been through.
Such a small little light the candle made
Until I realized how much in darkness it lit the way.
All the tears I've cried in all my grief and pain
What a garden they grew, watered with human rain.
I sometimes can't see beyond the moment, in hopeless despair.
But then your memory sustains me, in heartaches repair.
I can wait for the tomorrow, when my sorrows ease
Until then I'll light this candle, and let my memories run free. ♥ღ♥
XXXXXXXXXXX
Happy 1st Birthday Darling
To my beautiful beautiful angel daughter Lillia,
Today was so hard, I wish you were here to celebrate your birthday with us. Though it felt like you were here. We had lunch with your nurses and close friends which was nice, it was good to talk to others who know you so well. We had a few pictures of you on the table as you needed to be there. We then went out in the parklands where we took you for many walks to release 20 pink balloons for you. It was beautiful, the balloons stayed together for so long and blew over the city. I hope you got them in heaven darling. Just know you have so many people who love and miss you. Me being the one who misses you the most. Happy 1st birthday darling girl. I love you so so so so much. Forever in my heart and never forgotten. Love always Mummy xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Happy 1st Birthday!
Dear Lillia,
Happy 1st Birthday princess, Your big brown eyes and your bubbly personality has been dearly missed. I know your ringing those bells and probably playing with those pink balloons by now that your mummy and daddy bought for you!, You'll be forever in our hearts. Lot's of Love Bec xxx
...x
to little Lillia i hope you are at peace now & have made lots of angel friends, you was a very beautiful baby with a beautiful name aswell, stay close to your heartbroken family and keep them strong, my heart goes out to you all xxxx
Happy 1st Birthday Darling
Happy 1st Birthday beautiful girl. I can't believe a year has passed since you came into our lives. The moment you were in my arms I felt as if our family was complete. You made us so happy. We could not have asked for a more beautiful daughter and sister. You brought so much into our lives. Even though you didn't leave hospital until your last day you have left us with so many beautiful memories. Your big blue eyes made my heart melt whenever I looked into them. It wasn't just me who was mesmerised by them, everyone who met you fell in love. A piece of me went with you which I will never get back. Everyone says the pain gets easier as time goes on but the opposite is true. The pain just gets harder and harder as the days go on. I miss you so much, I just want you here with me where you belong.
We are having lunch with the nurses today for your birthday, this shows what an effect you had on them. It is going to be so hard today without you here. We are going to release some pink balloons for you so make sure you catch them in heaven. We also bought you a fairy princess carriage(something I know you would have loved) that we have put in your bedroom.
I love you so much, you were the daughter I always longed for. I miss you so much, I don't know how I am going to go on without you. You are forever in my heart, never to be forgotten.
Happy birthday darling girl.
Love always Mummy xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Ten tiny fingers upon your little hand,
Ten dainty toes on your feet to help you to stand,
I look into your sleeping face and my heart is filled with love,
How can something so beautiful now be an Angel above?
Your eyelashes so long upon your sweet face,
No one will ever take your place,
The joy we all waited for is now replaced by tears,
The numbness, the heartache, along with all our fears,
I want to hold you in my arms and never let you go,
My darling child,how I love you so,
A part of me went with you the day you were called home,
I feel that my world has stopped and I feel so much alone,
I gently place you down for one last time,
Tears are on my face as I whisper, "peace be thine",
Without you I am nothing, and never will be again,
All I feel is heartache and a huge, huge pain,
My darling child you will be loved and missed every single day,
Goodbye is too final a word for me to ever say,
God only gave you to us to borrow,
Loved today, yesterday and for all the tomorrows.
copyright@ Sandy
My heart is broken without you, never to be the same again. How am I supposed to live and laugh again without you, it just doesn't feel right. I want you here with me where you belong. Please know I will love you for eternity, till we are together again my beautiful girl. All my love always Mummy xxxxxxxxxxx
MISS YOU DAUGHTER
Miss you daughter with all my heart
The day we said goodbye i fell apart
Miss you daughter as you know
The time goes by very slow
Miss you daughter so very much
I miss your beautiful smile and your loving touch
Miss you daughter as you were my best friend
We done everything together right until the end
Miss you daughter like flowers need the rain
Please come back dear daughter and take away my pain
Miss you daughter like a lock needs a key
Miss you my darling daughter as you were everything to me
Miss you daughter like the beach needs sand
Miss you daughter i only wish i could hold your hand
Miss you daughter and there will be no other
Miss you daughter i will always be your mother.
copyright© Jackie Thomas 2009.
To my beautiful daughter, Lillia, you meant everything to me. I miss you so very much. You will always be a part of me, never ever forgotton. Till we are together again,
Love always Mummy xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
*♥~†~ONLY THE BEST~†♥*
A heart of gold stopped beating two shining eyes at rest, god broke our hearts to prove he only takes the best, god knows you had to leave us, but you did not go a lone for part of us went with you the day he took you home to some you are forgotten to others just a part of the past but to us who have loved and lost you the memory will always last.
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