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

It was seven years ago today that the girls and I moved to the Lake Norman area, it is hard to believe it has been that long, yet it has. Heather Riley has flourished in her new environment. She has physically, emotionally and spiritually grown by leaps and bounds.

I recently watched a couple of movies on Amazon one was a true story about a child with reactive attachment disorder and another about human trafficking. Both of these movies took my breath away. I had to stop and thank the Lord for placing Baby Grace in my path. As I watched these movies I thought about all of the young people I have encountered who both of these movies could have been about.

Kimmie, not a day goes by that I don't think about her. No child should know the pain she knew. Every baby should be loved and know safety. She never knew a mother that loved her as an infant. You can't fix that in a 23 year old, between lack of bonding, prenatal drug and alcohol exposure Kimmie is broken beyond just needing love. For a long time I felt like a failure when love wasn't enough. I understand, as I did then, that she needed to be in a facility and extreme structure. It still breaks my heart. 

I work with women who are trafficked every day in hotels uptown.  My best friend Stacy, Heather and I found ourselves in an unreal situation a couple of years ago when we were face to face with some "church men" who were picking up young homeless boys from the streets of Charlotte and taking them to a small town and using them for slave labor. We rescued them from the house they were in as the traffickers called the police on us! That was a crazy day.

Suddenly I am handed this baby. I look at her, I have knowledge of all these things, I know her mom. I know her life. I know her dad, I know his life. I know the other people who are living in the home and their lives.

I start my prayers the same way every day of my life:

"Lord, give me the wisdom and peace to follow Your will for my life without protest or fear."

When you are asked to take the baby knowing all of the terrible things that could and will happen to her what do you do? Do you stop and analyze all of the things, your finances, your life situation, your age, what your friends and family will think? Do you want a baby? Can you handle a baby?

No. I do what I have been led to do.
because I have prayed the same prayer every day of my life and when I make a decision I  feel peace with it, I trust that I am making a solid decision that is the right decision, I trust that the Lord has led us to the place we are and is with me. 

Have a freaked out at times? Absolutely. I am in my 40's with an infant. I believe God has a plan for Baby Grace. Every child is precious, and her life was spared a life of horrors I don't want to think about. Her biological parents aren't bad people, no one intends to do bad things, people are driven out of desperation and ignorance to make tragic decisions. We have always been okay in the past, and I trust that we will always be okay in the future.

Do I regret my decision, no. Not one bit. am I often tired, yes. Can I do this? Yes. The Lord will continue to get us though the rocky spots and we will use our lives to glorify Him in all that we do in both the easy and hard times.
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