characteristics of complex 1 defiency- help

[Guest guest]

Ok! Finally have some results on my daughter ( zoe 2.5

years) and her biopsy. The conclusion is a complex 1 deficiency.

Found some basic characteristics on the UMDF website, but it

is still confusing. Once again,we don’t know a lot – which I know

is common.

She has some brain issues present since birth,

underdeveloped cerebellum, left front lobe malformation and some myelin damage

which so far has not resulted in a seizure. There was a mild proliferation of

mitochondria…

SO here is my question. Am looking for some real nitty

gritty answers from those familiar with complex 1. Is one complex worse than

the other- has anyone else been able to get a prognosis on a complex 1 with

risks etc, specific to this type? The medical thought this far is she is

hopefully mild-moderately affected with the biggest issue being her brain

issues , but with so much unknown I wonder if anyone else got any worse case

scenarios for complex 1??

THANKS

Suzanne