Heather’s Story

Site created on September 23, 2007

Heather Riley has Lennox Gastaut Syndrome.  Heather Riley is beating the odds. With a positive attitude and a family that would go to the ends of this earth if need be. 


No child is just a diagnosis, and like many children with LGS she has multiple other health concerns, the "other health concerns" are certainly secondary to LGS. LGS is a monster no parent ever wants to face. LGS is a catastrophic epilepsy syndrome that is diagnosed by a very specific EEG as well as other specific criteria. It is not a "catch all" diagnosis. It is a serious and rare condition.


 she has a microduplication on Xp22.31

and an inversion of the 9th chromosome.

Heathers body does not process protein normally.







Newest Update

Journal entry by Denae A

We have been here since the 7th and never want to leave. Trust me, we have discussed that very thing. We have discovered we do not love the west coast. It is nice, but not the place for us. Shacks Beach is a place that I am mesmerized by and will, despite it being on the West Coast, be returning to in the future to snorkel. I also would like to scuba dive the Blue Hole. I snorkeled and was faced with things I do not have words to describe adequately. I have to return when the water is safer to be in and I can take it all in. God has given us so many beautiful places to see and created many wonders. It is impossible to see the things we have seen and not fall to our knees and thank Him for the breath in our bodies. 

We finally purchased tickets home. We will be heading home in March, we do have return tickets for June though. Depending on the hurricane outlook we plan on spending most of the summer here. Hopefully, we find a house and don't have to keep Airbnb hopping. Honestly, it's fun, but also tiring! 
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