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

February and March were amazing. We enjoyed soaking up the sun, and sand and loving each other in paradise.  We got home the second week of March and have been trying to get back into the groove of things back in NC which has proven to be a challenge. It's like we live in two different worlds, and switching from one life to the other is challenging, I am not complaining, don't take my remarks as such. I know and understand how amazing our world has become as it was once unbelievably rocky.  

My greater understanding of this came one afternoon as the girls and I were on a beach on the west coast; Playa Middles. I looked up from picking up exquisite pieces of sea glass to see my two girls walking along the deserted beach doing the same. The memory of a dream I had years ago came rushing at me like a tsunami. I had to sit for a moment. 

Roughly 24 years ago I had a dream. The moment I was experiencing with my girls on the beach was part of that, however in my dream, there had been another person walking alongside us, and this is why I just had to sit. I felt overcome with frustration and sadness. I took a moment to remind myself of the path it took for me and these two girls to even be in such a beautiful place. The ability for me to have them to spend 5-6 months out of the year there at this point? Is something that 24 years ago I never would have believed, I didn't understand the scene, the sea glass, the clouds, the clearing, the dunes, the rocks, the storms, nothing that was part of my dream at the time. Today I am sure there are still parts of that dream that I may discover as time passes.. What I do understand is that the toddler in the dream was Grace. She has the same birthmark on her thumb that Andrew use to call on his hand an "age spot" they both have the same mark. That to me, was God, nothing more, nothing less. 

I stood up, after collecting myself and determining that a storm was indeed coming the girls and I finished our walk. We headed back to the walkway in the dunes and were met by a fellow, around 60-ish. He was standing there as if he had been waiting for me. Grace ran up to him and hugged him as if she had known him her whole life. He looks me (uncomfortably) in the eye, and tells me he has been waiting for me to come. So, I pulled Grace back, because.. that's weird. 

I engaged him in conversation. I discovered he was a homeless fellow from Virginia living in Puerto Rico for the time. He had felt the Lord's call to come and help people build their homes back after Maria. He started a nonprofit so that's what he has been doing ever since. He is still homeless, as defined as not having a home. He said he simply goes where the Holy Spirit leads. Today he was sent to Playa Middles he said when he arrived I was walking up to him.  For anyone thinking "The dude saw a car" No, our car was parked much further away at another beach, and hidden in the bushes where the surfers hide their cars so they don't get tickets. Tourists park on the roadside and get tickets. (the west coast is a huge surf spot in the winter) I still get chills recalling the whole incident. 

We talked. I wanted to know his story, more than to tell him mine, to which he obliged. He is a very interesting human. Currently, he is in Ukraine. I did tell him parts of our story, why I had red eyes from crying on the beach, and why my heart now beats in Puerto Rico. Before I realized it I was pouring my heart out like I was in a therapy/confession. While this was taking place the girls were enjoying what was now a sunny day on the beach.  

I had to take some time away from everything and process the day, the interaction, and life. During our trip I came close to losing my life in a rip current I was caught in while snorkeling at Playa Shacks, also an event I needed some time to process. 

I still haven't processed it all. I can't verbalize it to people, and I sure can't write about it in a way that fully portrays what I want to get across. I haven't gone back to my bible study, I haven't interacted with many people outside of my family. I just want to be in my little circle for now, and "just be". 

Initially, I had determined that Grace would start Kindergarten next year. We have had a second assessment. The final decision has been made for Grace to attend transitional kindergarten instead. There are so many factors, but the one that leads me to agree with this determination has to be not wanting her to struggle any more than is necessary. I know she will have to work a little harder, an extra year may boost her just enough. Home school is an option as well. There are amazing home school communities in both our location in PR and in the area we are located in NC. 

Heather is doing fine, we had a serious issue with the pharmacy and her doctor's office right after returning with one of her medications. The decision was made to wean her off of the medication. Heather made the decision. This medication is a pain to get filled every month, she ends up going without it for several days no matter what action we take to prevent that from happening. She said she was fed up with it. This particular time she was at the two-week mark, and it was causing increased seizures (withdrawal seizures) insomnia, and terrible headaches. We just never picked it up.  Heather Riley is no better or worse for it. That's the thing with Lennox Gastaut Syndrome. There are cycles. She was started on this medication during a cycle of seizures. It wouldn't have mattered. Her base medication is currently Topomax. As long as her base medication is stable, she is stable. Her baseline is a few dozen small seizures a day and 3-4 tonic-clonics on a rough week, then on a good week only 1-2. She lives an active full life despite any diagnosis she has. Sure, we have cut activities short, had to make adaptations, and traveling with a few extra precautions and supplies, but life is meant to be lived and we are going to live it. 

We are packing our bags this week, we leave 34 days from today.  We will return at some point later this summer or maybe early fall, who knows?  We have family coming with us this time, a place to call home while we are there and friends. 

Patients and caregivers love hearing from you; add a comment to show your support.
Help Heather Stay Connected to Family and Friends

A $25 donation to CaringBridge powers a site like Heather's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?

Comments Hide comments

Show Your Support

See the Ways to Help page to get even more involved.

SVG_Icons_Back_To_Top
Top