Three Little Engines: Wow

Friday, April 9, 2010

Wow

Daddy is really moving up now! He's Victor. (The mechanic at the Sodor Works.) Jace still goes back and forth between Spencer and Percy, depending on how annoyed Aidan is with him. Damon is now Thomas. Not as new, but obviously Aidan's favorite. Yes, I'm still Henry. I don't see that changing anytime soon. Daddy is really glad he's no longer Slow Coach though. ;)

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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.