Long shot - anyone know anything about Hemimegelencephaly?

[r3dh3d]

It's been a possible diagnosis for DD1 for a while but looked like one of the less likely ones. Yesterday saw big shot Neurologist at GOSH who is pretty convinced it is the problem and is starting assessment for taking half DD's brain out

So - if anyone knows anyone who knows anyone who knows anything about this, would be v helpful.

OMG, I don't know anyone, but there must be something internet wise for something so traumatic. FOund this

Thanks guys.

Apparently the UK support group has closed down. I will call contact a family, thanks Fio, though perhaps I'll wait till the next MRI results come out and we are 100% sure. I don't think there is anyone else in the country (perhaps on the planet) in Helena's exact situation because this is her second incredibly rare condition - she also has Galactosaemia, completely unrelated to the HME just really bad luck.

Surgery assessment is a long process - about a year, I think, to check that you really are suitable. We're hoping to start assessment in the next couple of months.