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March 24, 2005

Hi, my name is Dyana and I just had my son passed away from

Cytochrome C Oxidase (COX IV). Connor was born on June 14th, 2004.I

have two other boys from a previous marriage (no genetic disorders

that we know of), and this was the first child between my fiancé and

me. We had a normal pregnancy and delivery (he even had a 7 and a 10

on his APGAR) but about an hour after he was born he started to have

seizures. He was on a vent for the first 19 days (off and on) due to

the seizure meds. He remained on a nasal canula after that. I have a

list of 12 active diagnoses' - sever reflux, in ability to swallow,

neurological delays, hypotonic, etc. After two months and several

tests - MRI, CT, EEG (which confirmed the seizures) Blood work-ups,

and sleepless nights -we were told in a nut shell - " all tests

(except the EEG) are coming back normal " . When he was scheduled for

a G-tube and fundo the geneticist ordered a muscle biopsy as a last

check. On Aug Fri. the 13th of 2004 - I received the call. We can

treat the symptoms; there is no cure, a few months IF THAT! Since

there was nothing else to be done we made arrangements to bring

Connor home and be a family for as long as we could - we still had

hope. He was able to come home for two almost three weeks total.

After a week back at ish Rite he passed away on Oct 6th, 2004

in my arms. There was only a 1% chance that my fiancé and I would

even come together and only a 25% chance of this happening (and that

is the % every time we get pregnant if we choose to have any other

children together) why can't I beat odds like that in Vegas! We are

sad but my motivation now is information, connection, support,

information. Does anyone know of geneticist that would be interested

in his case for research? Has anyone had a similar experience? What

can I do to help promote further research about genetic and Mito

specific causes?

Any info will be appreciated: thirdborn_2004@...

~Dyana

In Loving Memory of

Connor Trey Sands Irwin

June 14, 2004 - October 6, 2004

" Our little Prince "

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