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

I am telling you, and I know I am not the only one- I am absolutely sick of everything about Covid-19 or the Rona, or whatever you want to call this monstrosity that has been plaguing the world for over a year.  I am not here to rant about this subject. I have no desire to. I am here to make an announcement, and I had to wait until I told our family first. This is not the place I wanted people we love to find out I had made a major decision people who know me would be shocked to learn. 

What is this Decision?

This week Heather and I are both getting the Covid vaccine.

All of this happened very quickly, and was not initially what I said was going to happen. Since Heathers school is all virtual she is now my constant shadow at work. This means she is a essential health care worker and is also in group 1a for the vaccine.

Getting the email at work that we were in group 1a brought a lot of emotions and made the vaccine real. When faced with it I was forced to really consider everything for both Heather and I as well as what the future would be both if we did and didn't. Here is where the media and all those stupid PSA's and I are going to diverge. We are not getting this vaccine for anyone else, we are not doing this for the greater good or to protect others. We are doing this for ourselves. This is a self serving move. We are responsible for ourselves and no one else. Just like you are responsible for yourself and no one else.

My one rant through this whole pandemic has been that very thing. I have NEVER, not once expected you to do anything to keep Heather Riley safe. That is my responsibility. This isn't a debate it is a statement. You can disagree, thats fine. These are my feelings.

Other than that we are just doing life. Nothing out of the norm. Baby Grace is loving her little school she goes to a couple days a week. Heather is upset about school but is enjoying being out in the community interacting with people and having freedom to just "be." Inappropriate humor and ripped jeans dominate most of her days. She loves Fridays when we have a site we sit at for a couple hours, we hang hammocks and listen to music or she climbs trees while waiting for people to come..

Its a happy life.
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