We all hope our children will live long and healthy lives. Unfortunately, for some parents, this is not their reality.
In 2020, Carley and Bryden, along with their young daughter Elsie, were looking forward to the arrival of their second child, Albert.
On meeting him for the very first time, a beautiful boy with a mass of black hair, Carley knew something was not right – Albert wasn’t crying.
Carley told us, “I kept saying: He’s not crying. Why is he not crying?” After being resuscitated, Albert was admitted into the Neonatal Intensive Care Unit (NICU) and later the Paediatric Intensive Care Unit (PICU) while the family awaited a diagnosis.
After three heart-wrenching weeks of tests and uncertainty, Albert was diagnosed with Myotubular Myopathy, a life-limiting, rare neuromuscular disease, affecting all muscles but the heart. It severely affects breathing and swallowing.
Bryden says, “It’s basically a deformity of the muscle cells, the only muscle cells that aren’t affected are in his heart.”
Albert was given just weeks to live. Carley and Bryden were told that Albert would most likely live his limited life in a debilitative state.
Will you donate today to support the brilliant care of patients just like Albert and their families?
Carley and Bryden are just two of the hundreds of South Australian parents given a referral to the Paediatric Palliative Care Service at the Women’s and Children’s Hospital (WCH) each year. Helping a family navigate a terminal diagnosis truly takes a team full of compassion and respect. The Paediatric Palliative Care Team has a deep desire to provide care that’s equitable, fair and makes a profound difference.
The difference you can make to families.
Your support helps families in their time of need.
Experiencing financial hardship is incredibly stressful for anyone, let alone parents who are already facing significant challenges and worries due to having a child in palliative care.
Your generosity can help families in times of financial hardship due to a child’s illness or hospitalisation. Support includes assistance with bills as well as food and travel vouchers.
Your support helps children through art.
Having a loved one in palliative care is extremely difficult, especially if you’re young yourself.
Through our Arts and Health Program, Albert’s sister Elsie was able to utilise Art Therapy processes to express her feelings and work through what she was feeling through artistic expression.
Your support helps families make memories that will last a lifetime.
Taking time away as a family is near impossible when your child is in palliative care.
Your support can provide families like Albert’s with the opportunity to take time out of their rigorous routines to spend quality time together at the Laklinyeri Beach House – our purpose-built, medically equipped holiday home, funded and maintained by generous donors like you.
Your support will ensure the Beach House can continue to help families make memories for years to come.