Lucas Jonty Whitelegg was born on January the 7th 2013 we as parents could not have been more besotted in our beautiful little boy, a brother to Zach and Ryley.
Within days of having our little boy home he was back in hospital with staphylococcal scalding skin syndrome.
Settling back into being a family again was short lived with yet another admission to the hospital. It was not long before a cardiac arrest that saw our 9 week old baby intubated and ventilated. This was to become our baby’s and our family’s life for the following ten and a half months in the Paediatric intensive care unit at Monash Children’s Hospital in Melbourne. With the diagnoses of infantile botulism, and neurological condition that paralyses the entire body leaving him motionless unable to move, to open his eyes, show emotion, or even breathe.
Our little Lucas remained in a coma like state with us unable to hold or touch him for the best part of the ten and a half months. The buzzing sounds the bright lights the continual sense of urgency that surrounded Lucas and his acute illness everyday was what became our normal.
Our journey is best described as 3 steps forward 2 3/4 steps back. The financial, psychological, emotional and physical daily routine was enduring and days were categorized as great good and hard. Hard because emotionally the overwhelming roller coaster ride of our son’s condition and many other children and families that surrounded us became overwhelming. It was on those dark days that reflection on the many family, friends and strangers that provided us support, financially, physically and emotionally, saw each day through to the next. Knowing that people care, made a difference.
Our debt is too great. While we will never feel like our thank you is ever complete. Our way of saying forever thank you, is to now be that person who offers support to those who are in need of love and a helping hand, as we now know how hard it is and how life changing support of all kinds is. We are so proud that our little Lucas’s long enduring and brave journey has brought light to the need of a helping hand to so many other families. We are delighted that the Lucas Foundation has been established which we will endeavor to support for many years forward.
Bree and Andrew Whitelegg