Christine - Ellie's Couch transcript

Christine: I also knew in my heart that she would want me to keep going and help people the way I helped her. And that’s why I do what I do.

I’m Christine. I’m the Business Manager for the New England region. So, rural, being Armidale up to Tenterfield, over to Inverell, down to Walcha and everything in between, and I’m 54 years old. I had my first daughter and absolutely amazing. I ended up having, when I had my second daughter, she was born premature at 26 weeks, 6 days. She was diagnosed with chromosome ring 22. She also had cerebral palsy.

Ellie: What was she like when she was growing up?

Christine: Gorgeous, cheeky. She loved really loud banging, heavy metal music and my daughter would have the music on and she’d stand up at the stereos and literally stand there and just banging her head 24/7. As she grew up, I don’t know, I think it was mothers’ intuition. I just, I knew something wasn’t right. And then, you know, she started fitting, having major epilepsy. It was two days prior to the Christmas before she passed away that she had a condition called Phelan-McDermid syndrome, 22q13 deletion. So what we found out is her organs and that went into regression. Her body just shut down. Her seizures ended up a thousand times worse. And I took her home to be with family, to spend a bit of time with her. And then, on May the 12th, the year after, she passed away. So, yeah.

Ellie: If you look at yourself as a person before you became a mum. And then if you look at yourself after going through an experience of losing a child, how do you think that has shaped you now?

Christine: It has shaped me. I, for the first 12 months after my daughter passed away, I hated everything in life and I mean everything. I threw myself into work, working 24/7. I never focused on what had happened. And then around the 12 month mark, I did have a total meltdown, total breakdown. One day I just sat there and I just thought to myself, I can either make good out of this or I can make it bad. But I also knew in my heart that she would want me to keep going and help people the way I helped her. And that’s why I do what I do. My ultimate goal ever since having my disabled daughter is to just advocate for people with illness, injury, or disability.

Ellie: Do you live with a disability yourself?

Christine: About 18 months ago. I was diagnosed with Raynaud’s, where my blood cells don’t open up enough. So I just started to get really fatigued. I’ve got anaemia now due to it. In that, I also have cortisol and that as well because I have Addison’s.

Ellie: It’s just amazing to be able to hear your story today and to hear about how you’re using your daughter’s legacy to enable better lives as well.

Christine: I think it’s all my experience from having my disabled daughter to me now. I can use that on a day-to-day basis, to try and help someone.