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