Re: Hearing Loss_ JULIA!!!!!

[Guest guest]

Wow ,

This made me shiver it sounded so familar!!!How many BEARS we've done

and traveled for vision tests. She sometimes responds to our face and

voice. Loves christmas lights and music. But always comes out DEAF AS A

DOOR! AAARRRGGG! How was your son diagnosised? Muscle biopsy? I need to

learn more about MITO.

Thanks,

Gloria- new to the list

Mom of a 6yr. - undiagnosised

[Guest guest]

hi gloria;

orion was tentatively diagnosed based on just his symptoms and abnormal

MRIs and CT scans... he did have a muscle biopsy; unfortunately, he passed

away before we got the results. the biopsy DID show abnormalities though. the

real concrete info was found out from his autopsy.

oh, and orion also LOVED music-- especially the jackson 5 and luther

vandross *smile*

julia

orion's mommy

september 18, 1998 to february 3, 1999

familial erythrophagocytic lymphohistiocytosis and mito

In a message dated 1/10/00 12:47:20 AM Eastern Standard Time,

dsrtdwlr@... writes:

<< Wow ,

This made me shiver it sounded so familar!!!How many BEARS we've done

and traveled for vision tests. She sometimes responds to our face and

voice. Loves christmas lights and music. But always comes out DEAF AS A

DOOR! AAARRRGGG! How was your son diagnosised? Muscle biopsy? I need to

learn more about MITO.

Thanks,

Gloria- new to the list

Mom of a 6yr. - undiagnosised

>>