Here’s the Reality with GA-1

December 23, 2015

We saw Reagan’s new neurologist a couple weeks ago. We really like him. As he was examining Reagan he asked us what the MRI said since he didn’t have the records yet, and we let him know that the entire basal ganglia was damaged.

He seemed to be disbelieving of that.

“Both sides though?”

“Ummm…Yes? I believe so. It’s pretty substantial damage,” I said.

The Dr. had just finished examining Reagan. He took her on a walk, then picked it up to a light jog and asked her to keep up. He took her up and down some stairs in the PT area, and asked her to point out the nose on a really tiny army man. She did all of that. He had asked her to grab a tape measure and pull, with each hand. I can imagine that the Dr.’s wheels are turning…both sides of her body are working, she’s able to point to something tiny, she’s able to walk, climb stairs and keep up a fast pace…I need to see this MRI.

chasing reagan

Reagan’s genetics Dr. came into the appointment and pulled up the MRI.

“Oh. WOW!” Was the neurologists first response after viewing it. It seems we had conveyed correctly. One thing he said that caught Rob’s attention was the fact that there was no bleeding on the brain.

“I’m sorry, what?!” Rob said. “That’s a possibility?”

Both the Neurologist and genetics Dr. agreed. GA-1 attacks the basal ganglia in a crisis, and there can also be bleeding on the brain. GA-1 can wreak total havoc, as you all know since you saw it do that to Reagan. But a brain bleed can do much more harm than what was done to Reagan.

Over the thanksgiving holiday, a little member of the GA-1 community that I’m a part of passed away. The boy was very close in age to Reagan and without providing the full details, he did pass away due to GA-1. Any number of neurological things could have happened in the crisis that took his life. And in reading that mother’s words, I had to deal with the fact that that scenario is a reality. Even though Reagan has had a crisis and we’ve all witnessed how it took everything away, and watched together as our incredible God continues to heal her and bring everything back, it stopped me in my tracks. I became paralyzed with fear.

It’s the winter time, and flu season, and I’m taking Reagan everywhere. To stores. To the grocery store. To the beach. To preschool. To church. To people’s homes. What if that happened to her? What if we lost her? 

Ever since Reagan’s diagnosis and more so since her crisis, my mind has gone on these wild tangents. Instead of dreaming about her first day of Kindergarten, I wonder what I would do if I had to plan a funeral. It’s terrible to say. It’s also a horrible reality due to GA-1. I have to snap myself out of those moments and cherish the moments I have. I trust God. I really, really do. I’ve had to, and I also want to.

Rob and I do everything we can to keep the hurricane winds of fear away…the winds that try so hard to blow our candle out, and the wind is always blowing. Sometimes we’re good at keeping the wind away, other days it creeps in and blows our flame out and we have to reignite it again. I believe Reagan’s crisis allowed us to just live in the moment, to do more things with Reagan and to trust God more fully. Reagan’s crisis made us realize we are not in control and we can’t control her GA-1. The wind will always blow, which means we require more adjusting and honing and moving closer to God.

This holiday season, I’d ask for you to pray for the family of the little boy with GA-1 who lost his battle. Pray for all the GA-1 families and families living with rare disorders, diseases and disabilities. Pray for those who’ve lost loved ones. This time of year can be tough…but we do have hope in Jesus. We don’t have to live in fear and we can trust in the one who gave his life for us. He conquered all fear and death when he came to this earth and gave it all.

comments +

  1. Daphne Kirk

    December 28th, 2015 at 8:59 am

    Thanks for sharing – following from the U.K. with love

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