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Welcome to James web page.
This page has been provide
to keep you informed about
James. James was diagnosed
with x-linked
adrenoleukodystrophy. On
April 16 2003. What it
is.
Is the fatty tissue around
the brain cell is detoriating.
And there is
no cure for this disease.
James is 12 years old.
(birthday in June).
James now
stays at
Crotched Mountain in Greenfield,
NH. I had to place
him there July 26 of 2004.
Because I just could
not take
care of him by
myself. Crotched Mountain is
a wonderful place.
They can do
so much more for
him
then I could at home. And
plus James loves it there.
James has been progressing
quickly. He now
can not feed himself. He eats pureed food.
Can not contol
his urine
or bowels.He is
in pull-ups all
the time.And also he is
in a wheelchair almost all the time. James can
take a few steps
a day.
He does have a feeding tube in.
Just in case he does
not eat 50 percent of his meals. Also James
was born 13 weeks early. He weight
2 pounds 14 ounces and he was 15 inches long.
He lived in the
hospital for
almost 3 months
before coming home.
He came
home on oygen and
a heart
monitor. He
stayed on the oygen
for a
total of 4 months. The
heart monitor he stayed on for 6 months. James has been in and out
of
the hospital most of his life.
For mostly respiratory problems.
I invite you to
look at James pictures. I hope
he touches your heart and inspires you as much
as he does for me.
Journal
Saturday, February 1, 2014 5:17 PM CST It has been 3 months since James
earn his angel wings. I still can
not believe he is gone. Gone but not
forgotten. James has been by to visit
me it least once a week sometimes more
often. He stopped by this morning. He
was playing with my wrist bands. Usually
he plays with the touch lamp in the bedroom
or the nite light in the bathroom. I just
miss him so much. I have not even started
to clean his bedroom out here. I go in there
every so often and just stand there. I love
you my little man.
Read Journal History
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