Pam and Glenn,
You do not know me. I am a person on the list because I feel my family has a
mitochondrial disorder (no official diagnosis yet).

Please accept my condolances on the passing of your son. I hope it is
alright for me to share several experiences with you that I hope may lighten
your hearts a tiny bit.

When my youngest son was 3 he had a mild infection and I was determined not
to run him to the doctor that time as per my husband's feelings that I
always ran the kids in too much. At 2am one morning while sleeping on the
floor by the couch he was sleeping on (to monitor him) I awoke abruptly with
the single strong thought in my head to get him to the ER NOW! I jumped up
so fast that it woke him and he also jumped up and wandered to the bedroom
next to his father and threw up. Dad commented that he must feel better now
meaning "so you don't need to take him anywhere for help". My mind had the
singular thought and I was ready. I had never crossed my husband like that
before but it was like my mind and body weren't my own and I grabbed Shane
up and raced to the ER.
They x-rayed and showed me the tiny hole left in his throat to breath as his
eppiglotis was swollen almost totally shut (from meningitis it turned out
which had landed on that instead of his spinal cord or brain for some
reason). He was put in an ambulance and raced to the major hospital while I
followed in the car (in shock not able to realize exactly what was happening
yet).
He died at the hospital just as a Dr. who was an expert in emergency trachs
was walking down the hallway. He had woken up in the wee hrs of the morning
and felt the urge to go in and check on one of his patients (who was fine).
He ran in and did one on Shane and they worked for 9 minutes to get his
heart going again.
I was told if he lived he would be severely brain damaged.
Two weeks later I was able to bring him home. One night as he and I lay
together in the dark bedroom he asked me if I liked the dark and I replied
yes, it was calm. He told me the hospital room got dark and he went up a
sunbeam and 2 men came running across the street and told him to go home so
he flew down out of the clouds and then his throat hurt.
For months he would go to the window and gaze at the clouds and tell me God
lived there. He is grown with 2 small sons of his own now and doesn't
remember any of this. I will never forget knowing that God is in control and
that heaven is really there and that we go on forever.
My 2nd experience is when my mother was dieing. She went back and forth
between heaven and earth for the whole day previous and shared with us (her
7 remaining children) a beautiful world beyond (or around us as the case may
be). She didn't want to go on and leave my father who had ALzhiemer's so it
was hard for her to agree to leave here. It was like the other side had to
help her be comfortable with the decision. She saw my oldest brother who
died at 1 day old, her cousins, beautiful flowers, heard beautiful music,
went and got an answer for me on a medical issue! and has helped me since in
my opinion find an important link that guarenteed I had the correct
diagnosis, and finally was shown her home beyond with a pine tree in her
yard she said (we never knew that would be so vitally important to her). She
finally was able to move on peacefully with that knowledge.
Again, I was reassured that life goes on and God cares that much about each
of us and knows exactly of every part of us and will meet every need.
I pray your needs will me met as you face this most painful loss.
Love, Linda


-----Original Message-----
From: Glenn Rees <grees@...>
To: iem-family@onelist.com <iem-family@onelist.com>
Date: Saturday, November 27, 1999 4:28 AM
Subject: RE: [iem-family] Hemihypertrophy


>From: "Glenn Rees" <grees@...>
>
>Jennifer and family,
>
> we are the parents of Micah Rees although we have some very sad news to
>pass on. just this last Saturday, Nov 20th
>Micah passed away. he has had a very difficult year. just two weeks ago
he
>had a bad infection of the respiratory system and also a bladder infection.
>they had put him on a brand new antibiotic and seem to be improving. in
>fact, Friday he seemed to me doing rather well although he has been
sleeping
>a great deal. in fact all week we were having problems with his body
>temperature. he normally ran at 99.5 and above. but all week his
>temperature was low. in the 94 to 96 degrees.
>it did not seem to be any thing to worry about but it may have been the
>first signs his systems were shutting down. on Saturday morning at 4:30am
>his night nurse had a good night with him. his ventilator was functioning
>fine. at that time his feeding pump had alarmed that it was empty. she
>went over to check the pump. she touched Micah's body and noticed it seem
>quite cold. she then checked for a heart beat but heard none. she came to
>wake Pam and I up to let us know that she thought Micah had passed away.
we
>got up to see if he was able to be stimulated but he did not respond. we
>heard no heart beat. we called a neighbor who is an ER doctor to come to
>the house and check Micah. he came up and checked all of the vitals and
>other responses and pronounced him deceased at 5 am. we were able to keep
>him at home with us until 1:30pm. all of his nurses and most family
members
>were able to come by and say goodbye. things were not too bad until they
>removed his body. that was the first and only time he had gone away
without
>one of us with him. he was cremated and we are having a memorial service
on
>Sunday, Nov.28.
> Micah would have been 18 on Nov.25. he was a very wonderful son and a
real
>blessing despite all the difficulties. we will always remember his
>contagious smile. he got the biggest kick out of so many things. we know
>now he will suffer no longer and that in Jehovah's memory, Micah will be
>resurrected. what wonderful things we all will have in store at that time.
>we also are so fortunate to have Lilla (8) and Emmaline (5). they seem to
>be doing well with all of this.
> we were sorry to have brought you this sad news but we know you both
>understand what sorrow and adjustments we will be going through.
>
> love, Pam and Glenn Rees
>
>-----Original Message-----
>From: Jennifer Saks [mailto:jennifer@...]
>Sent: Tuesday, November 16, 1999 12:27 PM
>To: iem-family@onelist.com
>Subject: Re: [iem-family] Hemihypertrophy
>
>
>From: Jennifer Saks <jennifer@...>
>
>At 10:42 PM 11/10/99 -0600, you wrote:
>>From: "Glenn Rees" <grees@...>
>>
>>does anyone have information on this disease particularly regarding a 6
mo.
>>child.
>>
>>thanks, glenn grees@...
>
>Are you by any slim chance the Glen Rees who is the father of Micah Rees
>with Menkes Disease? If so, we'd love to hear from you!
>Kraig and Jennifer Saks
>(Nathan, Menkes Disease 6.Oct.1981 - 20.Nov.1995)
>
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