4 April 2005

The burden of knowledge.

I talked to my big sister yesterday. She happens to be a pediatrician. I told her about our meeting with Solveig and about Abbe’s diagnosis. My sister had heard of Solveig and she also knew some things about the 22q11-deletion syndrome, but because it’s a rare syndrome she needed to read up on it. She said she’d find out more and get back to me. That’s nice. She’s on two jobs here, half professional, half sis.

When she rang with a few links this morning she asked me to take all of it with a pinch of salt. “You have to keep in mind that in this information they’ve gathered all the symptoms that they’ve found in all the children with this syndrome. That’s a lot. That does not mean that all the children will have all the symptoms.”, she said, “Don’t panic when you read it, Abbe might never show any symptoms other than his heart condition”.

I read. And read again. For each word concentrating harder on what my big sister had told me.

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