Thanks so much SJL,

We're already joking with the genetics team that we may have to name what she has 'Tess Syndrome' since she's not fitting into any particular box at the moment! These doctors do love a lable don't they?

We are indeed blessed to have access to so much support and to live so near Randwick and the services here in Sydney. I think we are so lucky to have all of these amazing professionals helping us. It sounds like you have had a similar journey to what we are going through and been able to access good help as well

You've made me feel a lot better about the MRI, I appreciate that. I know it's a necessary evil, but it's definitely hard to commit to.

Thanks again!