Our journey as a family has been long and hard, but filled with joy and love for our beautiful daughter Kate.
Kate was born with a congenital heart condition called Tetralogy of Fallow – which affects 4 areas of the heart anatomy.  She also had Micro-cephaly (which means small head and brain) and Epilepsy, as well as feeding and breathing difficulties.  Kate really is a miracle baby – a strong little fighter who was a beautiful little girl.
The doctors can’t find a reason why Kate had so many medical problems – it is thought that she has a syndrome so rare it can not yet be identified by genetics.  Kate spent 40 weeks and most of the first year of her life, in hospital – Kate underwent countless operations including Open heart Surgery (aged 9 months).  
Unfortunately Kate’s heart anatomy was unable to be fully repaired – sadly she was deemed “palliative” in January 2010.  The doctors were uncertain how long her heart would keep working for – her big brothers James and Harrison understood that their sister Kate would not grow up to be big like them...  a huge realisation for boys so young.
The next 15 months Kate was lucky to spend at home, Mark and I cherished each day and provided full-time care to Kate 24 hours, 7 days a week.   As parents we devoted much time to sourcing funding for various medical equipment and respite – negotiating a difficult system with limited support.  Respite was limited and all funding only available to be used in the home. This was a tough gig – one which we endured because of devotion – and out of pure love for Kate.
In 2010 we travelled interstate to NSW to visit a purpose built facility that could provide appropriate care for Kate while our family enjoyed some much needed respite.  We valued this experience and the full nights of sleep that came with it.
In 2011 we returned for another much needed respite break ... as no such facility existed in QLD.  Little did we know that on this holiday we would experience firsthand the grace with which end of life care can be provided.
Unexpectedly and tragically whilst on holiday on 21st May 2011, Kate suffered sudden cardiac arrest.  By chance we were surrounded by the beautiful staff and surroundings of a place that specialises in Paediatric Palliative Care.  Kate chose to close her eyes for the last time... in the knowledge that her and her family were in the best of care.  Having this experience has made the journey of losing Kate that little bit easier for both Mark and I and our boys James and Harrison.
Had Kate’s death occurred in our hometown of Brisbane, how different would this experience have been!  As parents we cannot stress enough how much of a difference this made, when faced with the difficulty of losing our beautiful daughter Kate.
Our wish... is for all Queensland Kids and families like ours, to have what we had – the care and support of a specialised paediatric palliative care facility - when we needed it most.
Funding is needed for the establishment of Hummingbird House, so that QLD families like ours are supported throughout their journey with paediatric life limiting illness.
You can show your support for Queensland Kids like Kate by donating at http://www.queenslandkids.org/