Three Little Engines: Jacen's 1st stroller ride

Monday, October 15, 2007

Jacen's 1st stroller ride

I'm totally shocked these pics turned out so good, they were from my phone. So I'm quite pleased!

How cute is this? My three handsome men.

Jace had to put up with the sun in his eyes while his mom took photos... and of course, we see the ever present bib!

Aidan LOVED running thru the crunchy leaves! He was laughing so hard he could barely run.

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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.