Three Little Engines: Sharing an email from a friend

Sunday, April 27, 2008

Sharing an email from a friend

Something Special for your Sunday... The sisters in the ward saw this in Relief Society a while back...now FINALLY we can share it with ALL as our kids helped us create an account to share on You Tube - so...yeah!! Enjoy your Sabbath,Love,Gary & Jaylene Nix family

http://www.youtube.com/watch?v=1MpjfLrGooM

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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.