Hi, my name is Smilert!

Hello @Smilert and a warm welcome to the community.  I suspect you've been going through a very tough time and I hope we can make things a little brighter for you.
We have threads here on Neurological conditions, https://community.scope.org.uk/categories/neurological-conditions and on Undiagnosed and rare conditions, https://community.scope.org.uk/categories/undiagnosed_rare_conditions which may prove to be of interest to you.
Having been dad to a very young and very disabled little girl, it is likely that we have experiences in common, and I'm only too happy to share with you what I know.
Things are probably a little quiet here because of the weekend, so please bear with us and keep in touch.
Very warmest best wishes to you,
Richard