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I have a 3 1/2 year old daughter with Cytochrome C Oxidase

Deficiency with seizures. I am looking to talk to another parent

who's child has similar. Have not found anyone in three years. My

email is bethann@...

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My understanding is that this is a long name for Complex IV

deficiency?

If thats the case there are several parents on here who deal with

it...

My son is still undiagnosed until we get the biopsy results, but

Complex IV is one that is under consideration right now.

Keely

>

>

> I have a 3 1/2 year old daughter with Cytochrome C Oxidase

> Deficiency with seizures. I am looking to talk to another parent

> who's child has similar. Have not found anyone in three years. My

> email is bethann@r...

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hi, i think COX can cause Leighs, and Leighs Disease is what my

daughter has been dx.............. so feel free to write and ask

anything.

my daughter, anna grace, is 5. She does not have active seizures,

but did have a few following a head injury. She is nonverbal and

nonambulatory. However, she does not miss a beat. she is aware of

everything and is very social.

bethany

mom to brennan 8, palmer & anna grace (leighs) 5

>

>

> I have a 3 1/2 year old daughter with Cytochrome C Oxidase

> Deficiency with seizures. I am looking to talk to another parent

> who's child has similar. Have not found anyone in three years. My

> email is bethann@r...

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