| 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 | 8,773 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
I thought of you today but that is nothing new.
I thought about you yesterday and the day before that too.
I think of you in silence.
I often speak your name.
All I have is memories and a picture in a frame.
Your memory is a keepsake with which I'll never part.
God Bless you in his keeping but I have you in my heart.
I love you Lilli-Boo so much.
Love always Mummy xxxxxxxx
Merry Christmas Lillia xxxxx
To my beautiful angel Lillia
Words can't describe how I feel at the moment. The pain has not lessened at all since you left us. Tomorrow is going to be so hard without you here with us honey. I just pray that you are looking over us. We plan to release your pink balloons. Me, Daddy, Lachlan and Rylee are going to the cemetry in the morning to release 5 for you for Christmas. We are going to Uncle Chris' house for lunch and we will all release 15 more balloons for you. There will be Nanna and Pop, Uncle Chris, Tanya, Matthew, Hayden, Jake and Tayla, and Aunty Kerri, Uncle Pietro and Chiara and of course us. I hope you like them honey.
I have made a butterfly mosaic to put in your fairy garden honey. I just need to do the grouting, but I am a bit scared as I don't want to wreck it. I hope you like it.
Life is not any easier without you honey. I know you know our news and I hope you are ok with this. I just feel so guilty, it will not take any of our love away from you beautiful. You are in our thoughts every second of every day, this will never ever change. You are always the topic of conversation in our household. The boys constantly talk about you, they miss you so much. It tears me apart to dream about what life would be like if you were still here. Rylee told me today if you were here, he would tear a little bit of the wrapping paper on your Christmas present to help you open it. You are a very lucky sister to have them as brothers as they are lucky to have you as a sister and us a daughter.
You will be in our every thought tomorrow for Christmas as you are every day. We will light your candle tormorrow night, please drop by to say hello. I am still looking for a sign to say you are near.
My love to you always honey, and a huge hug and kiss.
Love always
Mummy xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
In memory of lillia
Dear Kathy,David,lachie & Rylee,our thoughts r with you.Lillia was beautiful, most amazing eyes,what a sweet heart.So sorry to see this has happened,(we were looking at some photos of lachie & kath from our greenock days,)Jack proceeded to ask where you guys were,that's how we found you kath on F.B,and we saw you had this beautiful daughter & sister..As hard as we can only imagine it is for you, we hope your families pain eases each day.So sorry Kath & David.All our best,Ali,Darren,Jack &Tomxx
In a baby castle, just beyond your eye,
Your baby plays with angel toys that money cannot buy.
Who are you to wish him back into this world of strife,
No, play on your baby, they'll have eternal life.
At night when all is silent and sleep forsakes your eyes,
You'll hear their tiny footsteps come running to your side
Their little hands caress you so tenderly and sweet,
You'll breathe a prayer and close your eyes and embrace them in your sleep.
Now you have a treasure that you rate above all others
You have known true glory,
You are still their mother.
Happy 2nd Birthday Lilli-Boo!
To my darling beautiful princess, Lillia,
Happy 2nd birthday honey. I wish so badly that you could be here to celebrate with us. This pain never ever goes away, it just burns stronger. It is so hard trying to imagine what you would be like today. I can imagine you sitting in the lounge watching your big brothers where ever they go, you adore them so much, I could just see this getting stronger. I know your brothers miss you so much, they never stop talking about you.
We will be releasing pink balloons for you tomorrow morning, I hope you get them honey. We are going out for tea for your birthday, though it will not be the same, not having you there with us. It breaks my heart thinking of all the things we missed sharing with you as a family, such as the simple things like going out for tea together.
I hope you are watching over us honey, please show us a sign to show us you are near honey. Just to know you are close would mean alot to me.
I am so proud to call you my daughter. I hope you have a lovely day in heaven, have a party with your angel friends darling.
Love always Mummy xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Always Near as You Walk
And I am no longer with you
Let no tears fall or sorrow prevail
When you see your reflection shimmer in the water
Smile and know that I see your smile
When you feel the cool grass beneath your feet
And the sun’s warmth upon your back
Know that I feel it also
When you hear the leaves rustling in the wind
Know it is my voice softly whispering to you
When you see a butterfly dancing among flowers
Know that I am dancing also
When you gently touch a puppy’s soft fur
Know that I too feel your touch
When the wind swirls across your skin
Know that it is I who caresses you
When you love another
Know that I too feel your love
These words are truth, my love
Have faith, my love
As long as beauty lives upon the earth and in the stars
And love lives in every beat of every heart
So then do I
So then do we all.
ANGEL OLIVERS BIRTHDAY PARTY
♥ Ƹ̵̡Ӝ̵̨̄Ʒ ♥ You are invited to ANGEL OLIVER Birthday Party on SATURDAY 26 of June 2010. Please come and make it a party to remember. ♥ ƸӜ̵̨̄Ʒ ♥
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♥ Ƹ̵̡Ӝ̵̨̄Ʒ ALL HIS ANGEL FRIENDS ARE INVITED Ƹ̵̡Ӝ̵̨̄Ʒ ♥
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♥ Ƹ̵̡Ӝ̵̨̄Ʒ Love from OLIVERS family Ƹ̵̡Ӝ̵̨̄Ʒ ♥
The tiny rosebud God picked to bloom in Heaven.
The master gardener from heaven above
Planted a seed in the garden of Love,
And from it there grew a rosebud small
That never had time to open at all.
For God in his perfect and all-wise way
Chose this rose for his heavenly bouquet,
And great was the joy of this tiny rose
To be the one our Father chose
To leave earth’s garden
For one on high
where roses bloom always and never die.
So, while you can’t see your precious rose bloom,
You know the great gardener from the upper room
Is watching and tending this wee rose with care,
Tenderly touching each petal so fair.
So think of your darling with the angels above,
Secure and contented and surrounded with love,
And remember God blessed and enriched your lives too,
For in dying your darling brought heaven closer to you.
Helen Steiner Rice
A Special Child - by Edna Massionilla
A meeting was held quite far from earth,
Time again for another birth,
Said the Angels to the Lord above
This special child will need a lot of love.
Their progress may be very slow
Accomplishments they may not show
And they'll require special care
From the folks they'll meet way down there .
They may not run or laugh or play
Their thoughts my seem so far away
In many ways they won't adapt
And they'll be known as Handicapped.
So let’s be careful where they're sent
We want their life to be content,
Please Lord find the Parents who
Will do this special job for you.
They will not realise straight away,
The leading role they'll have to play
But with this child sent from up above
Comes stronger faith and richer love.
And soon they'll know the privilege given
In caring for this Gift from Heaven.
This precious child so meek and mild
Is Heaven’s Very Special Child .
Copyright of Edna Massionilla
A year of pain
To my gorgeous girl Lilli-boo,
I can't believe a year has passed without you in my arms darling. People say the pain will ease but the ache in my heart is still so raw. I still struggle to accept that you are gone. I had so many hopes and dreams for you and our family. There is a huge gap missing in our family without you here with us, time will not heal this.
Today was such a hard day. We released some pink balloons for you along the River Torrens where we took so many walks with you. It was painful being there remembering all the good times we had with you there. After we took your brothers to the zoo, another place which holds so many memories for us of you. The monkeys you loved so much performed for us with their playful actions and sounds. It was if you made this happen. You were there with us, you go everywhere with us darling in our hearts and minds. This will always be.
Please know I love and miss you so much darling. The quiz night for you is tomorrow night, it will be a night where we can remind everyone else about you and your life. It will be a hard night but also lovely to let everyone else know how special you are.
I hope you are enjoying your balloons in heaven darling. Keep ringing your bells.
Love always Mummy xxxxxxxxxx
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