Hello, I'm Kelly. Our family consists of my beautiful, caring, and supportive husband, Tyler, our lively, inquisitive, empathetic 5-year-old daughter, Ella, and our darling baby girl, Rosie-Rae. And, at the heart of our story, our Angel Boy, Charlie.

We faced a heart-wrenching loss in January 2023 when we said goodbye to our son due to a rare genetic condition called Barths.

Since then, life has been a surreal journey. There will always be life 'before Charlie' and 'after Charlie.'

Navigating this new reality felt like solving a Rubik's cube blindfolded. I'm still uncertain where I fit in. While therapy was an option, what resonates most for me is sharing Charlie's story with fellow parents who understand the unique pain of losing a child. That's why Charlie's Angels was born - a space for healing hearts and helping others walk this tough path alongside me and my family.

Let’s go back to where it all began, on one hot summer day in January 2022. I was in the garden at home when a sudden wave of nausea came over me. When I was pregnant with Ella, I had never suffered from sickness, so this was such a new feeling for me. A pregnancy test confirmed our joy. Now, we all know how the story goes from here. When you are vomiting every morning, everyone says it is the sign of a healthy pregnancy. So, off I go, grin and bear it, and carry on. As my belly grew bigger, so did Ella’s excitement (she was 3 years old at the time), and she just simply couldn’t wait to be a big sister. My pregnancy was rough – I’m not going to lie. I was throwing up every single day until I was 27 weeks, and then came the heartburn. We didn’t find out the gender this time round as we wanted to keep it a surprise. I was leaning more towards a girl, Tyler hoped it would be a boy, and Ella just wanted to name the baby Flower Girl Elsa Girl Butterfly Girl.

Fast forward to 15th September 2022 12:00 pm, Charlie Ian Binnington entered the world. I couldn’t believe we had a little boy. He was absolutely perfect, a divine little bundle of joy that made us burst with love. I had a blissful 2 minutes of him on my chest until the midwives noticed his breathing was laboured. He was taken down to the NICU at SJOG. Little did I know or think that this would be the last time I held him until 48 hours later. 

Charlie was transferred to Perth Children’s Hospital, with Tyler alongside him. Our baby boy, only barely hours into his life and whisked away from me. I was in the hospital recovering from a C-section. Alone. Without my baby on the maternity ward. But alongside everyone else who was soaking in their own special newborn moments. All I could hear were babies crying, see dads walking their new babies around in the bassinets while mum took a nap, siblings coming in so excited to meet their new baby brother or sister, it was heartbreaking. And isolating. And all so scary.

Tyler stayed with Charlie at PCH as tests got underway to try and figure out what was wrong. Charlie had so many blood tests and scans that didn’t tell us what was wrong. After 12 days in the NICU, we were sent home – still with no answers. We had two weeks at home as a family before his follow up appointment. We had family photos done and life started to calm down a little. 

Tyler, Charlie, and I arrived at PCH for his follow up appointment. While we were in the waiting room we talked about going and doing Christmas shopping for Ella once we were finished at the hospital. We were called through, and the doctor began the check-ups. He listened to Charlie’s heart, and we were immediately sent for an ECHO and ECG. Charlie was admitted that day back onto the ICU at PCH. We were told that he had dilated cardiomyopathy, which meant he had a ‘floppy’ heart which couldn’t contract tight enough to pump fresh blood around his body. Our minds were blown, I’ve never been more afraid in my life.

Nine days we were in the ICU, still with no answers as to why. Why was our baby boy suffering and so sick? We were then discharged and sent home under Palliative Care, after being told there was nothing else they could do, we had no diagnosis. 

Just a few days later on October 31st, 2022, I received a call from the Metabolic team at PCH. They told me that the rapid genetic test had come back and Charlie was positive for Barths Syndrome, which affects 1 in 400,000 people with no known cases here in WA.

We were readmitted to the hospital for treatment. His treatment plan included heart meds and metabolic vitamins. All of a sudden we were learning how to change NG tubes, how to dose medications around the clock, and how to set up a feeding pump for him. We were running on adrenaline and caffeine. Charlie was in and out of PCH for months with multiple stays, blood tests, and scans. We remained hopeful the entire time that all of our hard work and care for our boy would help him grow stronger.

The nurses who cared for Charlie were incredible. Not only to him but also to me. They were there for the late-night chats and banter which makes life so much easier when you’re basically living in a hospital room. I’ll always be so thankful to them. We have made some lifelong friends because of Charlie Bear.

January 20th, 2023. We rushed Charlie to the ED at PCH because he hadn’t improved from a recent stay and his breathing started to sound restricted. When we arrived, we asked for an X-ray. This was to check for any secondary infections in his lungs that he could have picked up from the cold that he previously had. There were no secondary infections.

We were moved into a private room in the emergency department, and that’s when I knew. Our darling boy had fought a long and tiring battle with Barths Syndrome. And now, it was his time to fly. We asked the doctors to bring him home so that we could spend his last hours with Ella, our families, and friends.

On the 21st January 2023, Charlie Ian Binnington grew his wings. Shattering the world as we knew it and leaving our entire family beyond devastated.

If love could have saved you, my sweet boy, you’d still be here with us. I'll miss you every day for the rest of my life.