Other TAR Stories
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Paul White - Gisborne, New Zealand |
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My disability and what I have done - Adapted from a speech given to various organizations
by Paul White
 I have a very rare disability called T.A.R syndrome, which stands for thrombocytopenia and absent radii. Thrombocytopenia means that I have fewer platelets in my blood than normal. Platelets help blood clot, it is the glue of the blood world. In effect this means that I bruise more easily and bleeding takes longer to stop. The absent radii simply means that I am missing the radius bone, which is one of the two forearm bones, from each arm. It is a very rare condition, I was the first person in New Zealand with it, and we were told that there were just 20 people in the world with it. It is so rare that the only information that the hospital could find on it was in German. They had to put a plea over the radio for someone who could understand German to interpret it for them. The condition is also known as Gross-Groh-Wieppel, after the Germans who studied it.
When I was born, my parents were told that there was a one in a million chance of them having another child with the same disability. However, when my brother was born it quickly became apparent that either my parents were good at achieving long odds, or that the original estimate was a long way off. They now reckon it is more like 1 in 4. The doctors at the time said the condition was caused by a "chemical reaction between the chromosomes".
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We are committed that people with TAR Syndrome and thier families have a place to share thier victories and inspire each other. The journey can be long but these rare children make it all worth it.
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