CIKA was born because of the deaths of three precious children Scott, Katie and Wendy. CIKA was nurtured into life because three families were grieving and wanted to make a difference. CIKA has thrived because of a lot of dedication and hard work from everyone involved for the last thirty years. Those three precious children have changed the lives of thousands of children and their families, for the better.

Scott was born on December 16th 1976. He was our first child. He was the first grandchild also and brought so much joy into our lives. I still remember vividly the most overwhelming feeling of awe, wonderment and pure love holding my new baby boy for the first time, protectively in my arms. Scott was a little charmer, adventurous, loving and excited by everything in life. He walked at 9 months and seemed to have little fear exploring life fully. Scott had personality plus and a divine nature. When he was two and a half years old our second son Ryan was born. We felt the same elation of another miracle taking place!

It was only a week after Ryan was born when Scott started having pain in his legs, night sweats and a myriad of other unusual symptoms. I had written pages of notes of the unusual symptoms he was having and tried to show them the numerous different doctors I took Scott to. They didn’t even read the notes and continued to misdiagnose him. After visiting eleven Doctors during a six week period, Scott was diagnosed with neuroblastoma of the adrenal gland that had progressed to his bone marrow.

I was waiting in the hospital alone when the doctor told me the prognosis – a ten percent chance of living longer than six months. I knew he was sick but had not even contemplated cancer in a three year old child. Hearing the words from the doctor changed my life forever. I can’t describe the sheer terror of that moment and the next six months. Scott had constant treatments and operations. We were in hospital more than at home and I fought the system to sleep in the hospital with Scott. It was not accepted in 1979, and only tolerated because I was not leaving!

Our whole family rallied with incredible support and were prepared to sell houses and travel overseas for a cure. There was none! As devastating and nightmarish as the whole experience was I felt there was some hope! Scott battled for six months with a combination of treatments which were all horrendous. I know the only way I got through that period was because Scott needed me and Ryan needed me.

Scott was the bravest little man. He went through his treatments and hospitalisations with such an awesome attitude, seeing the best in every situation. After having chemotherapy and feeling ill, he would say “I had a lubbly day – I saw my favorik nurse and heard a ambulance”.

Scott had an illuminated cross with Jesus on it next to his bed, which had been my Sister’s from her confirmation. He had been fascinated with it and she gave it to him. I had told him Jesus would look after him. One day we were moving to another ward when Scott picked up the cross of Jesus, put it under his arm and said, “I take this – I look arfer him.” 

Scott lost his hair after the first chemotherapy treatment. While sitting in the waiting room, waiting for more chemo, he would get the attention of the other patients and run his hand over his bald head and say, “Don’t mess my hair up” and laugh. He got a laugh – he was two and a half years old – what an amazing sense of humour!

Scott died after his bone marrow transfer. It was the worst moment of my life. There was now no hope! Unfortunately that moment can still be felt. It was absolute hell to experience your three year old dying in your arms. It was absolute hell to put him through horrendous treatments for six months, and then watch him die. We couldn’t protect him; we couldn’t save him – my precious boy. The next twelve months was the hardest time of my life and if not for my son Ryan and my Mum, Sister and family I would not have survived “my worst nightmare!”

I am eternally grateful for having three years with “my priceless Scotty”. It has been thirty years since his death, but he is forever with me in my heart and soul and continues to impact my life. Scott is missed by me, Nigel (his father), Ryan (brother) JoJo (grandmother), Dianne and Brendan (auntie and uncle), John and Jean (grandparents) and many others.

Scott’s incredible spirit lives on in all of us. In his short three years he taught us many lessons.
He was fun: mischievous and cheeky.
He was loving: adored his baby brother Ryan.
He was adventurous, curious, excited, interested, courageous, accepting (of treatments and hospital stays) and, most of all, an inspiration to us. We treasure the precious memories!

The seagull story goes like this: Scott sees a dead seagull at the water’s edge one day. He asked what was wrong with the bird and I explained it was dead. Scott’s questions—“Where do you go? What is it like? Will the bird come back? Why did he die?” He kept asking. “Where that dead bird gone?” “Heaven” I said. He asked –“Lollies in heaven? God in heaven? …………..”
From that day forward he loved chasing the seagulls laughing continually!

I met Lois Tasker after Scott had been diagnosed. I sincerely appreciated her support during the hardest and darkest time of my life. I admired her ability to help me, when she had lost her daughter. The incredible support from family, friends, the community and strangers was overwhelming.

Many thousands of lives have been changed for the better through the deaths of the three precious souls. Good does come from tragedy! I’m pleased CIKA is such a strong charity and I am proud that despite being barely able to continue living we managed to start CIKA.

The world is a richer place because of our darling Scott and we will always miss and love him more than words can convey.

Karyn Hayes (Mum)