|
Home
Nicks Journal
What Is CEP?
Support Groups
Published Medical Journals
|
|
Mission
Statement Knowledge and awareness are the key for success.
To be successful you need to set your vision, your goal, and work hard to
achieve them. Success is not achieved without some failure, but do not use
the failure as a negative use it as a tool to learn how to do it
better. Make your vision and goals realistic, then build from there. |
Don't
Sweat The Small Things!!!
rsa...
|
Welcome to the website for Nicholas
Ashby
This
is his life story and cure for Congenital
Erythropoietic Porphyria (CEP)
This website is being built for Nicholas to show his daily walk
with the bone marrow transplant he received in December 2004. There
is a lot of information here on Nicholas' old disease Congenital
Erythropoietic Porphyria (CEP) his symptoms and cure. His
journal is kept up almost everyday with pictures and a story as to
where he is at during that day along with the previous journals
starting in August 2004. The last few years have had their ups and
downs for Nicholas but he is doing great now. You will find helpful
links and information for support groups and
to become a bone marrow
donor, along with blood and platelets,
information on CEP, Nicholas' television commercials both here
and in Salt Lake City, his published
Medical journal, along with a song written and devoted to
Nicholas and a friend Jackson
Baldwin (5-12-06) at the beginning of their transplants. If you
would like to see some other information on this website please e-mail
us here. |
July
05, 2008 Saturday - (Day +1304) Outpatient - (Day 1258)
|
|
|
|
We took
Nicholas and the baby out to the beach to play ion the freezing cold
water. There is still a lot of snow run off so it is very cold. We
found a shallow beach for him to play in where it was not too deep.
He loves the river. Please pray for Nicholas and his health. |
|
| |
July
04, 2008 Friday - (Day +1303) Outpatient - (Day 1257)
|
|
|
|
Went to the
Northfork camping and to see Nicholas on the fourth of July. He has
so much fun with the fireworks, hanging by the fire, and going to
the beach. He is so graet of a little camper and loves the outdoors.
He had a great time with his brother, Mitchell, Jordan, Mary Ann,
Doug, Jennifer, Baby Brailin, Dad, and the other campers. Please
pray for Nicholas and his health. |
|
| |
Previous
Journal entries (By
Month, Year)
.
Nicks Video
Clips from Salt lake City (Broadband Recommended)
Nicks
Music and Commercials from Idaho (Broadband Recommended)
|
CEP
Explained: (Aug 2004)
View
Nicholas' Published Medical Journal from Salt Lake City, Utah
(Live
Link Here)
Throughout
the last three years on 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 or Guenthers Disease we were also
told the severity of it. We know that there are less than 200
diagnosed cases of this in the world and 7 patients have been
treated currently. This disfiguring disorder is very rare and the only
cure is bone marrow transplantation.
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 transplanted 6 have lived long term and Nicholas will be the
8th treated in the world. 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.
|
|
|
|
History (Aug
2004)
Nicholas was born on July 10, 2001 and he has just turned 3 years old. 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.
Nicks 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. Just recently Nicholas needed a infusion of
IVIG. In Feb 2004 he started to break out in blisters from the CEP and
now in august we have a answer to his condition.
|
|
