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LGS Awareness Day & A Biblical Story About Epilepsy

This morning, I want to share a Biblical story about epilepsy.

“And when they came to the crowd, a man came up to him and, kneeling before him, said, ‘Lord, have mercy on my son, for he has seizures and he suffers terribly. For often he falls into the fire, and often into the water. And I brought him to your disciples, and they could not heal him.’

“And Jesus answered, ‘O faithless and twisted generation, how long am I to be with you? How long am I to bear with you? Bring him here to me.’ And Jesus rebuked the demon, and it came out of him, and the boy was healed instantly. Then the disciples came to Jesus privately and said, ‘Why could we not cast it out?’

He said to them, ‘Because of your little faith. For truly, I say to you, if you have faith like a grain of mustard seed, you will say to this mountain, ‘Move from here to there,’ and it will move, and nothing will be impossible for you.’”(Matthew 17:14–20 ESV)

November 1st is National LGS Awareness Day, Maggie’s medical condition. Before her diagnosis, I had never heard of Lennox-Gastaut Syndrome. Most people haven’t. It is an extremely rare form of epilepsy that presents in early childhood. Sometimes, a cause can be determined, but when a cause is unknown, genetic testing is inconclusive, imaging shows no evidence of trauma to the brain, family history draws a blank, LGS caused by unknown factors can have a marginally better prognosis. In Maggie’s case, we have no earthly idea why she has this; all tests have been inconclusive when determining the cause.

What distinguishes LGS from a generic form of epilepsy is what’s informally called the triad of symptoms. 1. Multiple generalized seizure types; 2. EEGs that show a “slow spike and wave pattern” during rest; and 3. Cognitive dysfunction. Maggie presents all of the above. She experiences tonic, clonic, absence, and drop seizures, which seem to be coming back. Every EEG, including those without seizures, shows a spike and wave pattern. Her cognitive dysfunction presents as being nonverbal and developmentally delayed in multiple areas, which requires a multi-team approach to interventions. Her condition is highly resistant to pharmaceutical solutions and though she has shown improvements from the ketogenic diet, she still experiences multiple seizures a day.

There are no guarantees that any of the efforts we are making today will change the trajectory of Maggie’s prognosis. She could, realistically-speaking, be nonverbal for the rest of her life. She could, realistically-speaking, continue to have multiple seizures a day regardless of any additional pharmaceutical treatments or surgical interventions we may consider in the future. She could, realistically-speaking, die in her sleep from SUDEP (sudden unexpected death from epilepsy), without warning. That possibility terrifies me more than anything else.

I have to check myself when I get frustrated or worried about whether everything we are doing is truly helping. I have to check myself when I feel my faith waver. Like the boy’s father in Matthew 17:14-20, I fear for my daughter more often than not. I question my faith. I wonder if the lack of scientific evidence to determine cause means there is a malevolent spirit plaguing my daughter and wreaking havoc on the electrical system of her brain. I wonder why, simply why, why God gave this affliction to my daughter. I simply don’t know. The absence of evidence makes everything conjecture.

Yet, faith is grounded on the absence of evidence. Faith is the belief in what’s unseen. Jesus tells me, I don’t need an ocean of faith. I don’t need a mountain of faith. All I need is faith the size of a mustard seed, which is only 1-2 millimeters. I need faith the size of a minuscule grain in my palm. This tiny seed of faith has the power to move mountains. My mountain-moving prayer is faith that my daughter will heal, that she will be seizure-free, that her brain will develop and that I could hear her voice one day. I pray that my mustard seed faith is enough for my family.

I trust God. If anything, Maggie’s condition makes me more attuned to my faith. Faith is built on trust in God, and I trust that all of this is for some greater purpose. I don’t know what, but maybe I don’t need to know. All I need to focus on is this mustard seed of faith.


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