Sandra’s Story

This is Kawasaki disease in Canada.

09/02/2019

This is Sandra’s story, as told by her mother, Pam.

It was February 2003, yet it seems like yesterday. Sandra was only 5 months old when it started. Fever, not nursing, pale and fussy. I took her to the emergergency room and  they thought chest infection. Day 2 she woke with a rash and still a fever. Back again to the hospital and she was admitted that night for 2 days. Still no answers. Only Tylenol and Benadryl would help. One doctor thought maybe KD. No one would listen. No one believed it could be, they thought impossible. Back and forth to the hospital, until day 16 — I went back to emerge again. Sandra was not well, not active, not happy. The doctor on call wanted to admit her again but no beds were available. At this time we didn’t know, but SARS was hitting our hospitals. I went home and Sandra was finally going to sleep. The doctor called me at 10pm that night. He made a call to a doctor on call at another hospital willing to see Sandra. It was out of town but we could go. I was tired, Sandra finally sleeping, no one to watch my son, I asked, “Can I wait till tomorrow?” He highly suggested not to. We went. Thank God we went. Sandra almost had a heart attack. Her blood was was so gelled they couldn’t get any blood from her. They did an echo and found four large aneurysms in her coronary arteries and a blood clot in one artery. We were then rushed to Toronto SickKids where she had a blood transfusion done. Then an IVIG transfusion. I was told they didn’t think she would make it. We were in SickKids for 7 days. When I was released I had to go home and have nurses come to show me how to take care of Sandra. She had two injections a day of blood thinners. I never thought I could do this. Her nursery became her hospital room. Seventeen days, seventeen long days of this disease building in her because the doctors said it was impossible for her to have Kawasaki disease. Nothing is impossible. Like the fact that Sandra is now 16 years old and thrives on life. We still deal with some issues. She is still on blood thinners, yearly check ups and has an aneurysm in her coronary artery.