Late last year Luca was finally booked in for an MRI on his brain- in particular his pituitary gland. When we got him all gowned up, the Doctor wanted confirmation that we were having an MRI for his pancreas?! Turns out, the MRI that was requested during lockdown (2021) for his pancreas was finally about to happen. Luca had been on a waitlist that long. To have an MRI, Luca has to be sedated because he can not lie still for 2 minutes, let alone 30-40 mins. The MRI for his pancreas was to follow up on the pancreatitis he was having, which has not happened since coming off a medication- so therefore, I DID NOT CARE for an MRI on his pancreas… please brain… do brain! A phone call was made to THE best Doctor in Luca’s life- his amazing paediatrician. She sent through a request to have an MRI on his brain instantly and it was happening.

Luca has only had one MRI on his brain. That was when he was 10 months old. That was when our lives changed. Did life change after this MRI? No. It just hammered home the cards we have been dealt, that maybe I needed to hear again. As the years go by and I see Luca slowly learn new skills and be in relatively great health, I do wonder whether the Doctors got it all wrong all those years ago. He is still here and SO happy. He doesn’t look unwell?! And, I don’t think he is unwell or unhealthy. He is just built different. His brain is different and works slowly. His body does what it can.

Luca’s brain is officially small and is slowly shrinking and deteriorating. His Doctor described the “highway” that sends the messages from the brain to the body as very very thin, which is why he learns and does things so slowly. This MRI compared with the one he had when he was 10 months old, all but confirms he has a Mitochondrial disease as his brain has deteriorated in the way that Mito does. The MRI report is all jargon that I’ve tried to google translate and really sounds like they are describing the brain of someone going through dementia, not a nine year old boy.

What does this all mean for us? It means I love and hold him tighter each day. I try to make sure he knows how loved he is. I try to make him cackle laugh as much as possible. I try to feed him all the foods he loves (chips, pasta and pizza). I try to encourage all his walking with me. I try to get in the pool and swim with him. I try to get him to chase me in his wheel chair or in his walker. I try to make sure he has the best time with this sister. I just try to make this the best life for him because one day his little brain may not be able to try for us any more.

I also wanted to take a moment to reflect on Luca’s girlfriend, Ivy, who sadly passed away in February this year. Luca and Ivy met when they were babies and have had a similar path way in life. I love Ivy’s family so much and I believe that in the future our kids will be together again. Luca loves Ivy forever. ❤