My name is Nadja. I’ve started this blog to document the semi-regular going-ons that we go through in the name of Luca. To help friends and family get an understanding of what we do in blog form-rather than draining them in person.

Luca was born on 21st February, 2015. I was so bloody thankful that he was born so perfect and healthy. How blessed I was to now have two healthy children. That emotion got shot down, to a stressful low 17 days later,  when Luca started going blue and holding his breath. He fought for his life while battling his first infection. He was in NICU for 5 nights. I couldn’t stay with him overnight. It was torture.

This was the first of many infections and many hospital visits. At 10 months old, after an abnormal MRI and lumbar puncture (which showed high lactic acid), Dr’s at the Royal Children’s Hospital (Melbourne) advised that what Luca had was a suspected Mitochondrial Disease. We had no idea what this was and said we wouldn’t “Dr Google” information. We were told that we SHOULD google as much information as we can to prepare ourselves for the worst. We asked how long Luca would live for (thinking they would laugh and say- no its not that serious). They responded with they did not know and were unable to give me a time. Google told me he would die before he was 2 years. Then another Google search told me 5 years. Luca is now 2. We are living with a son who we know will die a boy. We are living in Limbo Land. We are Livin’ La Vida Luca.