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Family Stories
Please note that families post their information to share their story in an effort
to help other families. We ask that you respect their right to privacy and use this
information judiciously. If you have posted your information and would like it removed,
please send an email with your name and email address to info@kdfoundation.org.
This page contains the archive of family stories from the year 2005 and earlier.
If you would like to read the newest and/or updated family stories, or would like to post or edit your family story, please visit
the KD Forum family stories.
Once you have posted your updated story on the forum, send us an email and we will
remove the story from here.
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Nina Aguilar
Ninapwaguilar@aol.com |
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Falcon, CO |
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Roque Wikstrom Aguilar: January 26,1993--March 13, 1993 at 8 years old (deceased) |
My son Roque got sick on Jan. 26, 1993. He had a fever and swollen lymph glands
on only the right side of his neck. The ER did a strep culture, but were so sure
he had Strep throat that they started him on antibiotics. The strep culture came
back positive the next day. Roque was a very a-typical case. He had few of the typical
symptoms, and wasn't diagnosed until Giant Coronary Artery Aneruysms had developed.
Then, even after 3 courses of IVIG, the aneurysms continued to grow, until they
reached 16cm. IV steroids stopped the inflammation and fever, and Roque came home
from the ICU. He collapsed, at home, about 3 weeks later. The doctors had told us
that he could survive several heart attacks, but I was the only person who thought
that Roque would die. He died on March 13, 1993. Roque's death devastated our family.
It has been 8 years since he died, and I have finally divorced. I now live with
my youngest son, who was only 4 at the time. Despite everything, I am happy again,
my 2 sons are doing well, and I now trust my own intuition more than what anyone
else says. You are welcome to contact me, 719-494-8182 (Mountain Time), or Ninapwaguilar@aol.com.
God bless you all!! Even though it is painful, I am glad that there are so many
children who have survived KD.
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Tammy & Faustino DeLosSantos Tammytrek@aol.com |
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Millington, TN
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Marcus: October 1998, at 14 years old
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Deb and Clark Stremke
Pacedheart@aol.com |
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Greenfield, WI |
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Ryan: June 1989 at 6 years old |
Ryan had KD at age 6 in 1989. The doctors were not sure he would make it. We were
lucky. Back then many kids with KD suffered even more severe heart damage then Ryan
and even died because it often went misdiagnosed. Ryan does have giant aneurysms
from KD and sees his cardio doc every three months now and has a full cardiac work
up. He has a stress test every six months. Ryan is now a sophomore at Purdue with
a double Major in Computer Science and Math and a Minor in Art and Design. He is
also on the Dean's List! If anyone wants to chat about how we dealt with KD long
term or just has questions please feel free to call. 1-414-321-8054. Or email me
at
Pacedheart@aol.com
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Karin Wicker krwicker@hotmail.com |
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Brandon, FL |
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Steffi: November 1999 at 6 months old |
Late diagnosis (Day 11). 1 year follow-up echo revealed no cardiac damage.
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Greg & Merril Chin
gregorychin@yahoo.com |
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Boxford, MA |
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Taylor: April 1998 at 3 years old |
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Taylor was diagnosed after about a week of high fever and other symptoms, including
sensitivity to light, swollen lymph nodes, and a terrible rash. He received a single
dose of IVIG and fortunately did not suffer any heart damage. All other symptoms,
including joint pain and peeling skin around the fingers dissipated within a few
months
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