The story of Danielle
This is our journey with a rare condition known as PPA2-associated sudden cardiac death. Leon and I met in 2017 and quickly fell in love with the hopes and dreams of starting our family. After COVID-19 made it impossible to have our wedding in 2020, we decided to have our first child. We welcomed our beautiful little boy Sonny into the world on 15 March 2021. When I say Sonny was pure sunshine that is an understatement; he was a dream first baby and always happy! He made the transition to motherhood and parenthood easy. Sonny was progressing as a normal child his age should, and we had no concerns with his health or development. By nine months he was close to walking and was also obsessed with our dog, Pablo. The two of them were little besties. At nine months, Sonny had mild gastro symptoms. As a first-time mum, I wanted to get him checked to make sure everything was okay, so we headed to the emergency department (ED). Within 40 minutes, Sonny had gone downhill and was receiving cardiopulmonary resuscitation (CPR). I was in shock and couldn’t believe it. Unfortunately, Sonny was unable to be saved, and we had to say goodbye to our sunshine boy on 19 December 2021. We had no answers and no family history of sudden deaths. I found myself googling and researching every condition under the sun.In February 2022, we found out we were pregnant with a little girl. I gave birth to the cheekiest little girl, Airlie, on 18 November 2022. Airlie was our heart healer and brought so much joy and healing to our family. As mentioned, we had no answers for Sonny’s death and Airlie was developing as she should, so we had no concerns. In April 2023, Airlie had mild gastro symptoms and given our history, we were alarmed. After a lot of back and forth in the ED and monitoring over a week, we made it to the ED just in time as Airlie went into cardiac arrest. Luckily, she was able to be saved.