Mikaere is doing really well, for the most part. We know this. We know his eyesight is improving and his tone and abilities are improving. We know Mikaere is doing the best he can and we’re currently in a time of forward momentum when things are good.
Except that we went and saw a neurologist who said that Mikaere’s MRI showed a loss in brain mass. A loss in BRAIN MASS. There is less of Mikaere’s brain because his neurones are dying.
Despite knowing this was likely intellectually, seeing it spelt out on a black and white MRI scan felt like a punch to the face.
We are doing everything, everything we possibly can to help him. And still, NKH is robbing Kai of his brain matter. His brain is being damaged, constantly. All day every day parts of his brain are dying. It was very very clear, even to me (someone who has no knowledge of neuro-radiology)
flicking between the scan he had with his gastro and the scan he had when he was born just how much damage has happened.
It makes me feel like I’m not enough.
The truth is that there isn’t anything I can do to slow the brain damage that’s taking place.
But I can fundraise for a cure. I can support Josephs Goal who in turn supports Nick Greene, who I feverently believe is closest to a clinical trial that will help he most number of NKH kids. They also support Dr Van Hove, who is the researcher with the most experience in NKH. It’s his research and knowledge that has opened the field for other researchers.
I believe between these two, they’ll find a cure for my baby.
Help us find a cure. Help us find a way to stop stupid NKH from killing more neurones off in my sons brain.
Please help. It’s hard to sit in an appointment to hear his brain is deteriorating.