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Read a story
Nicholas Ashby
 Nicholas Ashby was born on July 10, 2001. He was born 1 month
premature and was noted at birth to have hyperbilirubinemia and
a hematocrit of 22%. He was also noted early to have decreased
platelets. He was treated for this with no resolve to the cytopenias.
He has a very thorough work up by his local pediatrician Dr. Ambroson,
in Lewiston, Idaho, his hematologist/oncologist Dr. Judy Felgenhauer,
in Spokane, Washington, and his pediatric dermatologist Dr. Andrea
Domini, in Coeur D Alene, Idaho. Nick's current doctors in Salt
Lake City that will perform his bone marrow transplant are Dr.
Kushner and team, Dr. Pulsipher and team, and others to be announced.
Nicholas has had a total of 3 red blood cell transfusions, and
a bone marrow aspiration. In Feb, 2004 he started to break out
in blisters from the CEP and now in August we have an answer to
his condition.
Throughout the
last three years of Nicholas' life we have been searching for the
cure of his anemia. Since February, Nicholas' skin started to break
out in blisters that we know were caused by the sun. The blisters
pop and scab like a normal blister and leaves scars. This was only
on his face and hands. They took about 2 weeks to heal, but he
was getting more daily until the scabbing and scaring was out of
control. After the trip to Salt lake City, and we found out he
had CEP, we were also told the severity
of it. We know that there are less than 200 diagnosed cases. This
disfiguring disorder is very rare.
Long term disfiguration
includes brown teeth, thickening of the forehead, jaws, lips
and cheeks, bone fragmentation, extreme hair growth over the
entire body, delayed learning, and will not go into puberty.
Of the 7 we know of with a bone marrow transplant, 6
have lived long term and Nicholas will be the 8th treated this
way as far as we know. We are hoping that the doctors will
find a donor before flu season due to the fact that Nicholas
cannot get any sickness of any kind. This will cause us to put
off the transplant until he is healthy.
Editor's note: Nicholas and his family
are Sponsors of the APF. If you would like to read more about
Nicholas, please see www.nicholasashby.com.
Nicholas recently had a bone marrow transplant, a very difficult
process. Please pray that he continues to d well
while his own new immune system is taking over as it should.
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