Three Little Engines

Friday, October 26, 2007

I promised Grandma Weber a photo of this back when Jacen's legs didn't poke out yet. Whenever someone else is here that can take a photo with me in it (because I'm obviously the one always taking them) we don't think of this. Plus Daddy knows I'm not really into having my photo taken right now! So this is my improvisation. (Is that even a word?) It doesn't take more than two minutes for Jace to zonk out in this thing. As you can see, he's totally out.

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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.