2025 was a big year for Luca. It’s taken me a long while to be able to write about his big blip that happened almost 6 months ago, to the day. Is it any easier to reflect on now? Definitely not, but, as I look in the rear view mirror, I can see my beautiful happy boy thriving, which comforts me.

Two weeks into starting a new job with my beautiful friend, I received a phone call from Luca’s school. You know how they usually say in the first breath “everythings ok”. The voice on the other line did not say this. In fact, she said almost the opposite. “Hey Nadja, Luca is unresponsive and the paramedics are working on him, we are treating it like anaphylaxis. We have given him 2 epipens- did you want to come to school or meet the ambulance at RCH?” My decision was to meet them there. My calm/practical brain (not usually the case!) decided to go home and pack an overnight bag for me and Luca- just in case we stay overnight. I also had to finish this email I was writing, because- I don’t want to make any extra work for other people at my new job!!

My brain was going round and round. I send the same lunch to school with Luca every day. If he is suddenly anaphylactic to Bakers Delight cheese and bacon rolls- I’m screwed. I know how particular lunch times are school. One person is assigned to each child to feed them. Lots of washing of hands. No cross contamination. Just before lunch time, he was smiling and hi-fiving teachers. There was no sign of what was going to happen.

I arrived at RCH emergency and was told Luca hadn’t arrived yet. I waited 5 minutes before hearing an ambulance arrived with all sirens and lights going. I was ushered through to his school coordinator where I thanked her for riding in the ambulance with my precious boy. We gave each other a huge hug. This must be the worst part of her job. Was it in her jkob description? I don’t know. But I know she was heart broken to see one of her students who was smiling one minute, be carted off in ambulance the next. She relayed the info to me. What had happened. Once minutes smiling. Next eating. The next projectile vomiting and then lost consciousness. He was un responsive. The teachers and carers, pulled him out of his wheelchair and started working on him to get him breathing again. They used 2 epipens to try get him going again. When the ambulance arrived they gave him more adrenaline. He was not able to breathe on his own.

I was finally guided to see my boy in a resuscitation bay at RCH. It was almost a carbon copy of what I saw the first ever time Luca was admitted to hospital at 17 days old. Only he was my 10 year old baby who wasnt breathing. There were minimum 20 people all around him. Working hard to understand what was happen and understand who Luca is. Doctors, nurses, paramedics all doing their best. Asking all the questions of me, because I am the one who knows every single thing about this boy. Social worker asking if I’m ok, if I need tissues. I am OK… because I’ve come to expect this. Have I created a harder shell? Did I not quite understand the seriousness at hand? Luca’s peaediatrician arrived and I got the best hug ever known. I felt myself start to crumble.

When Luca was 17 days old and went to emergency, my eldest child was only 3 years old, so Luca’s dad stayed with her. This time, he was able to be with me. We were able to parent through this hardship together. What a privilege it was, to seek comfort and hugs from my husband. It can be so lonely in that hospital. I believe it was a huge shock to the system for him- after all, this was the first time he had seen this before.

The doctors treated Luca as if he was anaphylactic at first. Then pumped him with anti biotics in case it was an infection. They also treated him as if he had a seizure. Also looked into stroke and heart attack. In typical Luca fashion, there was no evidence of any of these things being the reason it happened. All blood tests came back clear.

Once stable, he was moved to ICU. One on one care. He was intubated (breathing tube) I stayed by his side for 5+ hours a day. Not a lot I could do. I felt like I was in the nurses way. I was now allowed to stay overnight, so reluctantly, who go home and sleep with my phone on in case anything changed. He was in ICU for 4 nights. I would watch his breathing like a hawk. Get to know every beep from every machine. I begged to have some work to do from home to keep my mind off things. When he was moved to a ward, my boy started to show himself again. I peeled a banana next to him and he put his hand out as if to say “yep, I’ll have some of that”. Banana IS his FAVOURITE food. It would be another 5 nights before he was climbing the walls (well, his hospital bed) and wanting to go home. He was being extra cheeky and laughing and smiling lots.

When we got home, I watching him like a hawk. With no reasons given why this episode happened, how could anyone prevent it from happening again. We can’t. I worried that if it was a stroke or seizure, will it set him backwards?! Well, according to his school teachers, when we sent him back to school the following week, he was like a celebrity amongst the teachers and carers. Lots of hi 5’s and clapping and smiling. Apparently, it was like a computer after you switch it off then back on. He was a new energetic boy!

What do I believe happened? I think it was a “stroke like episode” that occurs in people with Mitochondrial Disease. But, who knows! Once again, we are back to limbo land and loving the boy fiercely. He is the cheekiest bestest boy!