Noeletta McKenzie is a Champion for Change, RHDAustralia, and community representative and advocate for the START study.
How did you first learn that your child had ARF? how did this diagnosis make you feel?
I learnt my child had ARF at Maningrida clinic when she was 8 years old, she is now 17. She was experiencing all the symptoms, muscle pain, sore throat, joint pain, dizziness. I queried this with a nurse and was informed that my child should come to the clinic at once! I had no idea what was going on with my child. When learning of this strange disease I was extremely afraid. I had no idea what to expect, all I knew was that my daughter had a bad heart.
Did you know about ARF or RHD at the time?
I had never heard of ARF nor RHD. I was confused. What was this disease, how did she end up with it? What is going to happen to her? What about her future? Is she going to die? Is she going to be able to have children? Unfortunately there was a lack of resources available at the time.
What does caring for a child with ARF/RDH involve?
Caring for a child with RHD is extremely exhausting. You are always on your toes expecting the unexpected. Fearing that at any time she could relapse and end up back in hospital. My child ended up relapsing twice and was hospitalised. As a parent it is extremely important to ensure that your child is getting the needle every 28 days. I think the hardest part is taking your child to get the needle. Seeing your child in immense pain receiving the medication. The saddest thing is that this disease does not fall under heart conditions so that us as parents can claim carers payment from Centrelink. I know of families that have spent months interstate due to RHD and have gotten the required support needed!
How does this affect your day-to-day life now?
It affected my job as time was taken off regularly. It affected my other children as they too were fearful for my child’s future, it hurt my other children seeing their sister sick. My husband was a pillar as he took on the father role and escorted our child to Darwin on a number of occasions.
How has this diagnosis impacted the whole family?
Fear! It has put fear into my family. RHD is a scary and unpredictable disease. What of the future?
Is there any advice would want to give to other parents who have recently been told that their child has ARF?
Reach out. Ask as many questions as possible. Make sure, as hard as it is that you get the needle done every 28 days. Ensure your child is a part of the conversations with the doctors. And make sure your child is eating a healthy diet and brushing those teeth.
What has your experience of being a community advocate for ARF/RHD meant to you? Can tell me a bit about what your role as an AGC member for the START study involves and what this personally means to you?
I enjoy advocating for RHD/ARF. I have enjoyed the experience of being a part of something amazing as the START study. I do this in hope of one day finding a cure for RHD!!