Luca Kai Smith  01.10.22 - 03.08.23

Our little miracle. 

Luca was born with a complete AVSD, a heart defect which required surgery to fix, he was also born with Trisomy 21, Down Syndrome. 

When I found out Luca had Down Syndrome, I was terrified. I had no knowledge on what it meant. PADS were there for us from the very beginning and all the way through. The support and information that they provide is invaluable. This charity means so much to us as a family and in memory of Luca, we would love to raise money for them. 

Christmas 2022, I was sat watching my boys play on the floor thinking to myself how lucky, how blessed I am that they are both healthy. Luca was due to have his open heart surgery in the new year and we’d get it all done and out the way and I’d have forever with my boys. 

In the February of 2023, Luca came down with a cold and chest infection. He then went into heart and lung failure and we ended up in critical care at Alder Hey- Liverpool for 9 weeks. There were many times throughout that stay that we thought we were going to lose him. But our Luca is strong and he fought and he survived. He was a true warrior. During our stay Luca had to have life saving surgeries, ECMO, bowel and a heart surgery. We felt we had received the ultimate miracle in the April when we came home.

We had 3 amazing months together at home, as it should be. Luca learned how to roll over and enjoyed having a leg dance to his favourite tunes, playing and listening to stories with his big brother. We were going to get Luca stronger before he went back at the end of summer for his full open heart surgery. 

In the July, Luca became unwell very quickly and we were once again taken to critical care in Alder Hey. His liver and kidneys were failing and the doctors didn’t know why. He was fighting, within a few days the doctors were impressed with how quickly he was recovering. But then an MRI showed that Luca had suffered a serve brain injury, and he couldn’t fight anymore. 

Our hearts broke. Luca passed peacefully in my arms on the 3rd August 2023 at 21:54. We will never know the reason why what happened to Luca happened. And our lives will never be the same again. You were our light little Luca. 

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