A Long Journey
7th May 2012,
In 1995 my precious baby son was born with chronic liver failure requiring transplantation. As transplant technology was not nearly as advanced as it is today, Kiaren was not expected to live past his first few months of life. Due to transplant waiting times and many other factors he did not receive his life saving (and for him life changing) transplant until just before his 14th birthday.
For almost 14 years he suffered ongoing physical, emotional and mental trauma as a result of his medical condition and intervention. The mountains of medications, ongoing invasive tests and treatments, the emotional and financial strain was too much for our family to bare. The pressures where enormous, resulting in complete family breakdown. I was a young single mother with four young children.
Kiaren and I spent a majority of his life in hospital either at the Royal Children’s Hospital in Melbourne or the Children’s in Westmead, Sydney. Of course due to our circumstances I was unable to cope financially, emotionally or mentally with this ongoing strain. Due to the instability of our lives, I was unable to care for my other three young children who were placed into the care of family members and friends. Now 3 years since Kiaren’s transplant, these three children and myself suffer the consequences of my inability to care and protect them this still today. Further more, I was unable to hold a secure job as the instability, constant hospitalisation and level of care of my son was too great. We often doubted if we had any kind of future ahead of us and each day was full of intense pain. Extreme anxiety was something that I battle every moment of every day. Depression had set in for me to a paralysing degree.
Kiaren’s long term ill health and treatment/medications left him unable to cope with schooling. At age 13 his academic level of a 6year old. We were not eligible for any assistance for tutoring or academic support as he was not assessed as having a disability and could only access the short amount of tutoring support through Ronald McDonald House if he had survived his transplant. No matter what I did, who I begged for help, there seemed to be nothing out there for us, no help in any way. I continued to witness my son’s physical and mental health, and his behaviour declined dramatically as I waited and believed I had to prepare myself for the day when he was not going to be here with me.
In late 2007, 18 months prior to Kiaren’s liver transplant I was introduced to an organisation called Country Hope. In so many ways this wonderful organisation saved us, financially, emotionally and psychologically. My children were able to attend camp. They had never had the opportunity to experience anything like this in their lives. For me, the feeling of being able to let go of my child knowing that he would be safe, although it was terrifying to let go, for us it was a dream come true. I breathed a sigh of relief for the first time in his life.
My son now is looking forward to taking a mentoring role with the other children at Country Hope's ‘Time out for Life Camp' annual children's holiday program. He has now grown into an amazing young man with so much to offer other children attending the camp. My youngest daughter looks forward to the camp each year often saying that it is the only thing she looks forward to as she feels that she belongs and knows that she matters too.
I hope my letter can help others to understand the enormous benefits that an organisation such as Country Hope can have on the life of a child and their family. To this day I am eternally grateful.