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

Years ago I was at St.Leos praying in the church when I heard a voice respond "in my time, not yours" there was no one else there. It was a voice that I can't describe, it came from nowhere, but everywhere.  As I consider our lives today I can only say that everything is happening in His timing.

Many years ago I had a dream which was not a regular dream, to date I have seen many of the things in that dream come to pass. This morning when I read an email I had a dejavu and I thought about the dream for the first time in a very long time. God is not a liar, everything happens in His time. We can't rush His timing no matter what we want. His wisdom is greater.  Over the years I have kept   James 1:2-4 close in my heart and mind. Consider it all joy when you encounter trials, knowing the testing of your faith produces endurance, and let endurance have its perfect result, so you may be complete lacking in nothing. We have encountered so many trials, and through those trials we have come out stronger. I am thankful for all of them. If it wasn't for the worst of those trials my faith would have stagnated. Its amazing to me when people don' t have to suffer trials to have a strong faith. I am one of those unfortunate souls that has to go through the fire. I am here, I am thankful for it.

The friends and family we have gained as a result are beautiful. Heather Riley is here by the grace of God. Andrew is a blessing in our lives and now we have baby Grace who is an unexpected blessing to us. She bring so much joy to our lives. Who would have ever thought that we would have a baby in our lives!

As we move into the holidays we are reminded not to carry bitterness in our hearts. Heather Riley has been struggling with a girl in her class. We had a conversation about bullies and the best way to manage it. As hard as it is Heather Riley understands that the best thing to do is not to react no matter what she says.  I showed her from my own experiences that often the very thing this girl is looking for is a not only attention but a reaction. Holding onto bitterness and anger is unhealthy. When I talked to Heather Riley about the situation with this girl at school she kept talking about the things this girl does so we changed the conversation and focused on what Heather can do. The reality is we can't control the actions of other people. It took a long time and many conversations but I think she finally understand that she can't control this girls actions, but she can control her reactions, Heather understands she can control how she thinks and she can chose to ignore this girl- even if the girl lies. The people who know Heather know her character and know the truth about her so what the girl says doesn't matter.

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