Three Little Engines

Monday, October 22, 2007

I left the room for 15 minutes and returned to two bald men. Aidan is having fun feeling his buzz. I used to cut his hair like this all the time. So it wasn't that shocking to see him suddenly with no hair, but it was to see his dad.

Had to get the three of them together with the same "do"... Aidan's sick, so he's not really in a posing mood. Jacen is just wondering what on earth the fuss is about, his hair looks like that all the time.

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Okay, here's the thing:

For those who don't know already...

My oldest, Aidan, was diagnosed with a severe form of Epilepsy called Lennox-Gastaut Syndrome that is not treatable by the time he was 5yrs old. Then Jacen, with mild Cerebral Palsy w/seizure disorder, and Damon with Epilepsy. Later, after extensive testing, specialists said we are dealing with an untreatable neuro-degenerative genetic disorder that all three boys have. Genome sequencing results are still pending for mitochondrial forms that all testing and history points directly to. Heartbreakingly, Aidan passed away September 14, 2014.

All 3 have had varying degrees of developmental delays and regressions, but the same symptoms and in the same cycle. They are just at different stages of the disorder. The genome testing will hopefully provide an answer to the specific genetic markers causing all this so we can maybe, just maybe, make them a little more comfortable as they pass away. Jacen and Damon have now been diagnosed with LGS as well. And Jace is on Hospice. This is my journal.