Kaason was born in 2010. 3 weeks in as a mum I knew something wasn’t right. He always had his fist clenched, feeding was a nightmare, always being sick and never gaining weight. I took Kaason to the GP with worry and we were sent to see a paediatrician. He had an MRI and when he was 2 we were given a diagnosis of cerebral palsy.
Fast forward a few years and everything was going great. There were a few problems with weight so he was fitted with a peg and everything started to go well again, he was gaining weight and crawling.
In 2019 I noticed Kaason wasn’t using his hands like he used to and his fingers would swell up. I took Kaason to the local hospital where we had an MRI. Then I got a call to say Kaason's brain is shrinking. We’ve had an EMG which confirmed muscle and nerve loss and lots of other tests all coming back clear. We are now waiting on one more test and this is our last hope of finding the cause of his brain shrinking. Mine, dad's and Kaason's bloods have been in the lab since October. It’s called whole genome sequencing and this might give us some answers.