What would you do?
So I've just seen a profile on here of a mum who commented on a post and being nosy as I am I just clicked on her photo and can't stop thinking that her son has a lot of features of a baby with Sanfilippo syndrome.
I have never spoken to her or matched or anything.
Would you tell her? Just in case she doesn't know or hasn't heard of this?
If you were her, would you like to know?
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You don’t know her, haven’t spoken to her, don’t know the child? It’s really rude to semi diagnose someone’s child based off one photo and even if it is true, what makes you think they don’t know?
I think you’d come across very patronising and rude.
Id like to know, but I am very science/medicine minded so would either have suspicion myself or be interested in learning more x
They may already be aware. majority of people do not put their child's diagnosis in their profile as that is something personal. I'm sure you're coming from a place of concern and only having the best intentions. However, you have stated you do not know her or her child and haven't matched nor spoken to her... in this situation, I would not say anything.
Additionally, the features you saw could also be something other than Sanfilippo syndrome. Early on their are other mimics of it.
She may know, the pediatrician may have mentioned, or maybe they have a diagnosis, etc. and they just don’t talk about it online. I don’t really share much about my son’s diagnosis online as not everybody needs the details. Our close family knows some details (if they care to know or they’re around him a lot), his teachers and therapists obviously know, and if people ask questions we share, but we don’t post about it much online for strangers.
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