| 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 | 2,690 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
Sending lots of hugs and kisses
Tiny Angels
Tiny Angels rest your wings
sit with me for awhile.
How I long to hold your hand,
And see your tender smile.
Tiny Angel, look at me,
I want this image clear....
That I will forget your precious face
Is my biggest fear.
Tiny Angel can you tell me,
Why you have gone away?
You weren't here for very long....
Why is it, you couldn't stay?
Tiny Angel shook his head,
"These things I do not know....
But I do know that you love me,
And that I love you so".
Author Unknown
♥♥ AN ANGEL FOR AN ANGEL ♥♥
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A Prayer For Lillia
You can shed tears that Lillia is gone,
or you can smile because she lived,
you can close your eyes and pray that Lillia will come back,
or open your eyes and see all that she has left,
your heart can be empty because you cannot see Lillia,
or you can be full of the love you shared,
you can turn your back on tomorrow and live yesterday,
or you can be happy for tomorrow because of yesterday,
you can remeber Lillia and only that she is gone,
or you can cherish the memory of Lillia and let it live on,
you can cry and close your mind, be empty and turn your back,
or you can do what Lillia would want; smile, open your eyes,
love and go on.
Author unknown (this prayer was given to me by Colleen a volunteer at Ronnie Mc at your funeral)
I know this prayer is so true but it is so hard moving on without you darling. I miss you more each day, my arms are empty without you. Your short life will live on in my heart until we are together again. It is such a struggle to go with the flow of daily life without you. Even though you are no longer here with us we asked Karen Nietschke to be your Godmother (which we had been planning to do before you passed away), she said she was very honoured and will always look at you as her God-daughter. I gave her a pandora braclet that had bells, an angel and pink charms on it. I wish we could have done this officially with you here. I love you sweetheart now and forever. I hope you are happy and I am still waiting for a sign that you are near.
Love always Mummy xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
For a beautiful little girl
A million times I've missed you, a million times I've cried.
If love alone could have saved you, you never would have died.
To some you are forgotten, to others just part of the past;
but to me who loved and lost you, your love will always last.
It broke my heart to lose you, you didn't go alone,
for my life went with you -sweetheart- the day angels called you home.
For things on earth didn't matter, but now I feel so alone,
My heart will always be broken, my life will never be whole.
We might be parted for awhile, our hearts will always be together
for one day soon we will hold hands again forever.
~Unknown
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Little Snowdrop
The world may never notice
If a Snowdrop doesn't bloom,
Or even pause to wonder
If the petals fall too soon.
But every life that ever forms,
Or ever comes to be,
Touches the world in some small way
For all eternity.
The little one we long for
Was swiftly here and gone.
But the love that was then planted
Is a light that still shines on.
And though our arms are empty,
Our hearts know what to do.
Every beating of our hearts
Says of our love for you.
~ Author Unknown
Sometimes it's hard to understand
To see the reason why,
Sometimes it's hard to find the words
To say that last goodbye.
Sometimes it's hard to look ahead
With eyes still filled with tears,
But all our cherished memories
Will live on through the years.
And though there are no answers
The questions still remain,
Sometimes we just can't comprehend
Or understand the pain.
Sometimes it's hard to look beyond
The rainclouds in the sky,
Though all our cherished memories
Will stay as time goes by.
Sometimes when we close our eyes
The only thing we see,
Are moments that are long gone by
Of how things used to be.
Sometimes we need to just let go,
Let tears fall as they may,
Reliving cherished memories
That never fade away.
(Author unknown)
Please dont cry Mummy,
Your angel is right here.
Although you cannot see me,
I can see your tears.
I visit you often,
I go to work with you each day,
And when it's time to close your eyes,
On your pillow is where I lay.
I hold your hand and stroke your hair,
And whisper in your ear.
If your sad today mummy
Remember I am here.
God took me home,
This we know is true.
But you'll always be my Mummy,
Even though I'm not with you.
Daddy please don’t look so sad,
Mommy please don’t cry...
I am your little little angel,
and we will never be apart,
For every time you think of me,
Please know I'm in your heart.
My Beautiful Darling Lillia
To my gorgeous daughter, Lillia,
Where do I begin? There is so much I want to tell you, I miss you so much my heart feels as if it breaking. Though, I guess it is broken as you took a part of it with you when you got your angel wings. Everyone says the pain get easier as time goes by, but this is not true, it is just getting more painful not having you here with me. I find it such a struggle to move on and get on with life, when for, very brief moments, I feel happy I instantly feel guilty. It doesn't feel right to be happy when you are no longer here. You have left such as impact with me, I struggle to see how I am ever going to be truely happy ever again.
We are still raising money for your memorial fund, so far we have raised $5500! Daddy and I also donated a trophy to the netball club in your honour called the Lillia Cluse Memorial Shield. Angela Prior received it, we were both a blubbering mess when it was presented to her. The criteria we set for it were many traits that you possessed such as inspiring, determined, selfless, hard working and persistance. It is going to be an ongoing annual trophy.
Daddy is on the verge of getting a tattoo of your face on his arm. I already got your name, hand and foot prints on my lower back. It is nice to know a part of you is with me always.
I hope you are happy up in heaven and that you are surrounded by many loved ones who have passed before you. I am still looking for signs that you are near me, please just give me a little sign, just to let me know you are ok. I worry about you so much.
I love you so so much my gorgeous girl, this love will never fade. I look forward to the day that we will be together again. You don't know how much I want that right now, just to hug and kiss you again. You are in my every thought and will be always. I love you Lilli-boo. Keep ringing those bells in heaven darling.
Love always Mummy
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Dear Lillia
~~~ Sleep Softly My Sweet Child ~~~~
I'm sending lots of cuddles and kisses
Wrapped in a blanket of love
I'm sending them on a shooting star
to my child in heaven above
The blanket of love is for you
to snuggle down to sleep
The cuddles and kisses are special
Just for you to keep
Mummy knows your cared for
In heavens nursary
And until I come to join you
angels take care of you, for me
So sleep softly my sweet child
snuggled up so tight,
Sleep softly my sweet child
As I lovingly think of you tonight.
I miss your laughter, fun, and gentleness.
I miss the things I used to do for you.
I miss the time, now filled with emptiness,
When each day was a stage for something new.
I miss your love, though mine for you remains,
A passion with no outlet to the sea,
A teardrop in a desert, that contains
What's left of my maternal ecstasy.
I miss your presence, like a silent chord
That anchored even solitude in grace.
I miss, for my love's labor, the reward
Of seeing some small pleasure in your face.
All these I miss, and yet they are all here
Within my heart, far more than I can bear.
Tiny Angels
Tiny Angels rest your wings
sit with me for awhile.
How I long to hold your hand,
And see your tender smile.
Tiny Angel, look at me,
I want this image clear....
That I will forget your precious face
Is my biggest fear.
Tiny Angel can you tell me,
Why you have gone away?
You weren't here for very long....
Why is it, you couldn't stay?
Tiny Angel shook his head,
"These things I do not know....
But I do know that you love me,
And that I love you so".
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