From the moment our little princess came into this world it has been a better place. We nickname her “tink”, short for tinkerbell.

As the story goes tinkerbell was born from laughter. When a human baby laughed the laugh flew across the sea and arrived in Neverland.

The laugh then turned into a unique like fairy known as Tinkerbell.

As we all know fairies can only survive / exist if humans believe.
If there is no faith or if people stop believing, the fairy will fade away.
What wonderful magic!!!!!

Little Tink is strong and fiesty, sweet and innocent, beautiful and kind.
Everything I see in our Aria.

Aria’s story began on the 26th of june 2004.
Being 28 weeks, and weighing 1070grams Aria was amazingly strong for such a prem. Obviously needing to be in intensive care, she was however breathing by herself and by the next week she had moved up to high dependency and was doing exceptionally well.

Aria had developed a startle action which was becoming noticeable but we were told nothing to worry about. Then for investigative reasons she was transported to the Westmead to have continual video EEG and an MRI for which she was sedated then put on a ventilator. (At this stage she was only 5 weeks into this world (not even term) and 33 weeks into her life).

From the moment we arrived at Westmead, a Neonatologist sat me down (without my husband) and explained that obviously Aria’s brain was shutting down and we should consider turning off the ventilator. This news was new to us, and an obvious shock. The decision had to be made in a matter of days.

Suddenly we were thrown into a very serious place.
We wanted to make choices for Aria that were right for her and us.
I believe we all have a journey in life, whether it is short and difficult or long and prosperous - it is still someones own life and experiences.

We decided she had to make the choice. We decided never to actively resuscitate but to take her off the ventilator slowly. She was to be tube fed. She was not to go home on oxygen.

This was a tough call for a little girl.
A few days later our sweetheart did take things into her own hands and self extubated.
Our little angel continued to breathe on her own.
From that moment on we knew we had done the right thing.

Apart from this, we were told Aria’s prognosis was not even not good - it was terrible. She will be severely disabled, mentally and physically. She will be bedridden. She will have no understanding, no recognition, no responses.

October 2004 we were able to take our angel home 16 weeks after her birth. It was exhilarating and terrifying. We had been told Aria would pass away any day, most probably in her sleep. Again we needed to take a breath and a step into her future.
As can be expected there was not much sleep in the Clarkin household but Aria was loving being at home, and not going anywhere.
Her beautiful big sister Eirelie loved that too. Mummy was not always at the hospital and she could actually play with her little sister.

Trying to understand the expense of our future we took an opportunity offered to move to Brisbane Qld . We would be able to buy into the housing market and hopefully have a better lifestyle for both of the girls. As we arrived in Brisbane we were also very lucky to meet a lady in our hotel who used to work for Xavier. She set the wheels in motion and we are so grateful.

Aria’s prognosis has never changed but her diagnosis has moved goalposts a number of times. Initially the thought in Sydney was Malignant Migrating Partial Seizures, then some form of Mitroochrondrial disorder maybe …lysomal ?.
The latest on the drawing board is Vanishing White Matter.

As the story goes 2 ½ years later Aria is still with us and going strong and having fun. She is severely disabled physically and mental ability is unknown. It is said that due to the damage that the brain has undergone, the loss of white tissue (determines that there would be no cognitive function) and the severity of seizures there is no mental ability. However, her signs of recognition, responses and smiles do tell us that they just don’t know.
Aria’s condition is still a mystery, we are continuing to search for answers.As well as her overall health being strong, Aria has inner strength. Something that science can not explain …spirit. Her spirit is so strong and powerful. When people meet Aria they say there was something special about her. She is full of life. That is how we feel. Our little “Tinkerbell”

I know there are times where we believe maybe a miracle will happen , maybe she will get up and walk and talk but we must all have hope and be there to take her where she needs to go. Even if it is not necessarily what we would wish for her – we may be surprised.

For us her life has enriched ours forever. Life seems more raw, more real and far more beautiful.
It has been said that life is a journey, not a destination and Aria’s journey rings true to that. We will take each moment and cherish it.

JUST CLAP YOUR HANDS AND BELIEVE !!