“Where do you begin? When we were asked to be Cure Kids ambassadors we were truly overwhelmed. Over the years we have met so many extraordinary families that we now call friends and it is very special to be asked to represent them and this amazing organisation.
For the past eleven years my little girl has been living with cystic fibrosis. Eleven years ago I did not know what cystic fibrosis was, let alone the incredible journey it would take us all on.
I was 27 weeks pregnant when I was told that Isabella had cystic fibrosis. It is a moment I will never forget and one that haunts me to this day. There is this huge fear of the unknown and a feeling of complete and utter helplessness. It was hard for me to comprehend that this little person inside me, that seemed so alive, was in fact so sick. It still brings me to tears thinking about that time. What I did not know then, was that she would be such a wonderful gift that would bring so much joy to so many people.
Isabella made her dramatic entrance into the world on the 25th of July at National Women’s Hospital. There were 15 people in the theatre with us. No one could give us any reassurance that she would survive the birth let alone the transportation to Starship and the operation that she would need.
She came out yelling, there were tears and cheers and then she was whisked away in bubble wrap and cotton wool to begin her next perilous journey to Starship. A 12-hour operation to remove 2/3 of her short bowel followed. That was the longest 12 hours of my life. I was so far away from my baby when she needed me the most. I did not see her until she was two days old. Surrounded by wires and tubes and pumps but she was alive and fighting.
For the next year we called Starship Hospital home. She had her first smile, her first words and her first steps there. So many firsts shared and celebrated with so many people.
No one journey is the same with cystic fibrosis. Each and every child climbs their own mountains and every one of them make the world a better place. For Isabella, cystic fibrosis affects her gut and respiratory system. Her mucus is sticky like PVA glue and attracts numerous bugs that leave her breathless and in need of IV antibiotics. She endures 30 minutes of physio twice a day, has a gastro intestinal feed and relies on IV nutrition. She swallows over 20 pills a day and spends long periods in Starship Hospital every year.
When you write it down like that it sounds horrific, and, at times it is, but in reality what it does not show you is the brave little girl who will not let her condition rule her life. It does not show the little girl with a heart as big as the world who makes the most of every situation and who loves life with a passion.
And so our journey continues. Where it will take us I do not know but what I do know is that I am incredibly proud of all my girls. Bella for her strength, and my big girls for their love and patience. Something like this affects every member in the family. For us it has made us stronger, better people. We have had some wonderful experiences and it is a journey I feel so grateful to be on.
We look forward to being on the Cure Kids team and having an opportunity to give back to a community that has given us so much over the years.”
Alley – Bella’s mum.
Cure Kids is proud to support research into cystic fibrosis.
Professor Bob Elliott (University of Auckland) was one of the founding members of Cure Kids in 1971. Prof Elliott is world-renowned for his research in a number of child health fields, including cystic fibrosis, where, from 1976 to 1979, he was instrumental in developing the test for cystic fibrosis screening of all NZ newborns; resulting in significant increase in average life expectancy from six to 37 + years-of-age.