Recently I received an e-mail from a father whose son is a lot like Daniel. He was responding to the picture and description that I had placed with a Diagnosis Search service that SpecialChild.com provides. He told me that after seeing Daniel and reading about his characteristics and the testing that we'd already done, he thought my boy might have Angelman Syndrome, the diagnosis his own son was only recently given.
We struck up a correspondence and compared the two boys. They both not only share a lot of the typical Angelman Syndrome characteristics, but some outside the well known AS profile as well. I asked him to send a picture of his little guy, and when the electronic images were delivered my heart did a double take. They could be brothers!
This internet introduction did more than pique my interest in exploring the possibility of an Angelman Syndrome diagnosis again (Daniel, like this man's son, had a negative FISH test--an AS diagnosis tool--done a year ago). I'd come upon someone from my tribe, and it felt good. I'd been in "Holland" for two and a half years and finally bumped into another American whose trip to Italy had been re-routed. Looking at the little boy born just four months before my own, I felt an urge to hold him to my heart.
For all of the silver linings we as "special" parents are able to find, it still feels lonely sometimes. Especially for those of us whose children have rare, often undiagnosed syndromes. Finding someone, even one other someone who knows your language right down to the most minor of inflections common to your particular dialect can be sooo reassuring. It says, "I'm not alone in this. My child is not alone either."
And that pretty much says it all.
Carolyn Murray, Mom to Daniel
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