Three Little Engines: Damon's sitting

Thursday, May 6, 2010

Damon's sitting

Hey Damon!

Look at those fat feet. Cutie pie.

And that mohawk hair growth, what a crack up.

Poor Damon has the stupid "Fifth Disease" that is going around like wildfire. It's hardly noticeable with his older brothers, but he's been hit hard.

1 comment:

Buzybugs pixie.blogspot.com said...: Ahh, he is growing up SO fast.. He is So darling! I am sorry about the 5th disease that stuff sure is nasty; my kids would get it really bad as well.; May 11, 2010 at 10:55 AM

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.