May 28th 2013 we welcomed our beautiful Daughter Lylah into the world and our family was complete. 

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Life seemed perfect however we were blissfully unaware of the struggles to come… we noticed delays in her development in the first few months of her life and by her first birthday we were frequent flyers at our local hospital with Lylah constantly being admitted for pneumonia and breathing issues.

At 18 months of age Lylah was flown to Perth via the Royal flying Doctors service and tested positive for Human MetaPneumovirus (HMPV) where she was admitted into the ICU at Princess Margaret hospital. Within The following 6 months Lylah was scheduled to undergo a MRI under general anaesthetic to look further into her brain functions however her pre anaesthetic check showed low saturations so the procedure was too high risk until further tests were done, those tests led to the Diagnosis of Severe Pulmonary Hypertension with ASD and PDA… our world fell out from underneath us after the words came from her Cardiologists mouth especially when we heard this could have been corrected if she was diagnosed sooner as the survival rate at her current age was just not worth trying to correct.

Cardiac surgery to ligate her PDA came in December 2016 however her Pulmonary Pressures needed the ASD to remain open as another bypass route for the pressure to flow through her heart without causing too much damage. 

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In February 2020 Lylah was Admitted to Perth Childrens hospital to have spinal surgery to help correct her scoliosis kyphosis curvature of her spine and she powered through the procedure however after discharge was re admitted after we presented to the hospital with concerns for her breathing as she was working very hard and had discolouration to her skin and lips, as we presented to the doctor Lylah began to deteriorate with her Saturations dropping into the 60s and her heart rate was in the 180s a code blue was called and Lylah was diagnosed with sepsis from a pressure wound from her spinal brace.. she spent another month in hospital followed by a 4 month course of antibiotics. 

August 17th 2020 we were all asleep when in the early hours of the morning at approximately 3am we were awoken to the sound of heavy breathing coming from Lylah’s room when we woke expecting to walk in to see Lylah having a seizure as she suffers from them quite frequently although we were horrified to walk in and see her gasping for air and presenting with a dusky skin tone.. I jumped into her bed and began to check her airways but she had no obstruction present, she continued to gasp and began to lose consciousness as I pushed her up into her fathers arms she had gone limp and stopped breathing…