KALI

Kali is now 7 years old as of May 2002. She has Glanzmann's Thrombasthenia. This is a rare bleeding disorder that causes her blood not to clot. She inherited this from a dormant gene from her father and one dormant gene from her mother, as far as we understand. She has a brother 5 and a sister 9, neither one have this disorder. However, the doctor's had told us that one in 4 of our children might have this bleeding disorder.

This bleeding disorder is not something someone could catch from her as it is genetic. This is hard for some people to understand.

From birth Kali had severe bruising and if she cut herself she would bleed for days where someone else would only bleed for a few hours. I could tell something was wrong but no one would believe me. I had doctors telling me that she was just real fair with her blond hair and blue eyes and that she would just bruise more easily than my older daughter who had dark brown hair and green eyes. We live in a rather small town in Wisconsin and the doctors didn't have any experience with something like this. She would have nose bleeds that lasted for days, she would be so bruised up that people would approach me in the grocery store and accuse me of child abuse. Yet no one could tell me what was wrong or that we even had an actual problem.

Finally Kali had to have some dental surgery. The dentist was not aware that anything was wrong and went ahead with surgery as usual. After surgery was when he realized we had a problem. When they removed the surgical tape Kali had bruising and actually had a layer of skin come off with the tape. The dentist said he never had seen anything like it in his life. Then the bleeding started. Normally a child went home a couple hours after surgery with no bleeding. Six hours later Kali was still bleeding. Finally he sent us home. Kali had bleeding from her mouth for another 3 days. The dentist reported this to our pediatrician and also recommended us to a specialist in Marshfield. I know this story is getting long but it took us years to get a diagnosis. In Marshfield we spent another year doing all sorts of tests. It took me months to realize that they were checking Kali for child abuse, looking in her eyes and taking pictures of her bruises. Finally I got fed up and told them to either give me a diagnosis or refer me to someone else. And that's what they did.

Kali was almost 4 years old my now. We had been referred to the blood center ofSoutheastern Wisconsin, which is located in Children's Hospital in Milwaukee. It took Dr. Montgomery just one dayto find Kali's problem. Type 2 Glanzmann's Thrombasthenia. At last we had a name to put with all the problems. It was such a relief to be able to tell teacher's or other people Kali came in contact with of her problem. I had one doctor tell me that a mother's instinct is the greatest factor in determining children's diseases. I tell you this because if you feel there might be a problem with your child remember that you know this child better than any doctor ever could. Kali is doing fairly well at this time. Of course the bruises never go away, and every day we have to be careful of her activities. She loves to dance and sing and we love her very much. And we try just to let her be herself.

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