Any experiences of gene therapy trials for neurodiverse children?

[OttoGraph]

Im not sure where to put this

But has anyone's neurodiverse child had gene therapy? obviously for a gene mutation, this gene therapy is in the trial stages still

Child is under neurologist at a children's hospital and the chid has been put forward for gene therapy ( obviously with permission) ,

Looking for any advice, experiences etc

You know your own situation. I can only comment on my own.

@Lougle I agree that there's nothing likely to restructure the brain from scratch, that would indeed be bizarre! But some paediatric neurological conditions are degenerative so I suppose one hope might be that the deterioration could be halted?
Many conditions with a well defined mutation have autism or ADHD as one of the differences, just as many other people who are autistic or have ADHD have no well defined genetic cause or we actually know for sure it's multiple genes involved.
I guess what that's telling us is the brain is complex and many things can alter the path of development even if the end result looks a bit like something that got there a different way.

Rather than gene therapy for neurodiversity it sounds as if the gene therapy trial relates to your child’s underlying genetic condition which is life threatening (given that they’ve been in PICU 3 times).

You might get more support by contacting a support group for that underlying disease. Most people on Mumsnet are unlikely to have any experience of this situation.

Sorry, I’ll try again; a mutation that’s causing what? What are they hoping to ‘cure’ with this gene therapy?

i had thought that there might be others with gene mutations of different types on here that might be able to share experiences. Pp has given another place, so I shall go there

As well as Unique, the Sandcastle Trust might be relevant to you and worth looking at.

There are lots of types of gene mutations though, I asked what the therapy your child is being put forward for is for, is it for the neurodiversity, or something else?

thank you, that is really helpful and relevant as it is a condition which is 1/20,000