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Family Stories

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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.

Nina Aguilar Ninapwaguilar@aol.com
Falcon, CO
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.

 

Tammy & Faustino DeLosSantos Tammytrek@aol.com
Millington, TN
Marcus: October 1998, at 14 years old


Deb and Clark Stremke Pacedheart@aol.com
Greenfield, WI
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


Karin Wicker krwicker@hotmail.com
Brandon, FL
Steffi: November 1999 at 6 months old
Late diagnosis (Day 11). 1 year follow-up echo revealed no cardiac damage.


Eric & Ellen Holtzman  eric.holtzman@citicorp.com
Hagerstown, MD
Hannah: September 2000 at 3 years old


Greg & Merril Chin gregorychin@yahoo.com
Boxford, MA
Taylor: April 1998 at 3 years old
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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