Anyone know about this?

Bill Peck wildbill at PRIMENET.COM
Fri Mar 26 21:54:05 EST 1999


I apologize for cross-posting this to five different newgroups, but a
friend has a 2 year old who is dying and I am looking for information.

Dakota is 2 years old.  His insides are being taken over by blood
vessels.  Apparently, this condition is extremely rare.  The best term
they can come up with is "Systemic Lymphatic Angiomatosis."  The cells
in his body that produce blood vessels during gestation have never
stopped reproducing.  Blood vessels are reproducing continually
everywhere inside his body, and as a result, forming "nests" and "webs"
and masses.

All the treatments he has had have been experimental. Dakota has had
respiratory arrest and heart failure.  Each time, so far, he has been
able to be revived.  The most recent life-threatening condition has been
with his lungs.  They have filled with fluid and then turned to mass.
The doctors tried surgery to correct this, by scraping and sealing the
lining of the lungs.  However, we have just recently learned that it was
not successful in keeping the disease out.  The blood vessels have eaten
right through the lungs in a short period of time. The right lung is
completely taken over and the left is partially.  His breathing is
labored, but with medications,
his oxygen level is maintaining right now at a good rate, but probably
not for long.  Dakota looks and acts normal except for having to be on
oxygen on and off.

The doctors also determined this week that the disease has spread to his
chest cavity, throat, heart, and spleen.  With it spreading this fast,
there is little time.  The doctors are continuing with chemotherapy to
try to slow down the disease.   Dakota also gets blood transfusions for
hemoglobin and platelets regularly.  He requires them about every other
day, right now.

Dakota is currently being treated by Dr. Cornelius at DeVos Children's
Hospital in Grand Rapids, Michigan.

If you are familiar with this, or a similar condition, please contact me
at jdolson at iserv.net.  If you know of an appropriate newsgroup, feel
free to cross post this message, but not after May 1, 1999.  Please *do
not* cross post to any 'alternative' medicine newsgroups.

Thank you.

Jim Dolson
Grand Rapids, MI
March 18, 1999
jdolson at iserv.net





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