DLA and rare genetic disorder

[Momo18]

Hi does anybody have any experience applying for DLA for a child with am extremely rare genetic syndrome? I don't want to share which my son has as its very outing. Just a bit scared about how DLA will deal with the claim if they don't know of the genetic disorder, I have checked online and it's not even listed as a health condition on there decision maker guidance notes.

I have attached his genetic results which includes a brief description of symptoms associated, a report from the school Senco detailing how the school had his speech disorders diagnosed by a private therapist, various A&E reports due to accidents from his disorder and a copy of his physio program.

With regards to DLA, my son was awarded this last week. It is based on care needs and mobility (mobility is only awarded for over 5s) - it is not based on a diagnosis at all. My son in fact does not have a diagnosis and whilst I would advise submitting all relevant reports etc that support your claim, you will not be awarded DLA just on that.
It's worth looking at some of the guides online - you have to be very detailed with your answers and there are some phrases and wording that it's important to use. I looked at the cerebra guide for assistance and also searched mumsnet for threads about DLA related to my son's needs that helped. I didn't realise how much extra I do for my son until I saw all these things listed.
It may also be worth getting in touch with any support network you have - i.e. if there is a charity connected to your child's syndrome - as they may have someone that can help you fill the form out. I'm not sure but citizen's advice may be able to help too.
If you haven't already sent it off, I'd recommend calling the DWP DLA line to request the forms - then you can add more pages if needed, plus if you phone up for the form they will date stamp it and if you get the DLA awarded then they back date it to the date you called.
It's great you have all those reports etc, but you'll still need to detail everything - you mention a physio program so under the care section you'll have to list how long and frequently the child does physio/exercises etc.
Sorry if this post is very rambling, I've not been well so not 100% coherent tonight. In short, what I am saying is that they do no assess on the actual medical condition, but actually assess on the care you have to do which is in excess to care you would provide for a non disabled child. So it won't matter if they haven't heard of the condition - in fact, I think I read that the assessors aren't necessarily medically trained.
Hope this helps! I've just done it and its a slog and emotionally draining so good luck.

Thanks that's really helpful, will definitely use that website.