The Flog – The Fabry Log

Some good friends know about our struggles and have come alongside to help in numerous ways. Last week I got an e-mail about Reagan. Our friend knew he has this little camera and likes to make movies with it, but Reagan’s real camera and editing software is back in the house in Colorado.

When Reagan began having vestibular problems, vertigo and dizziness, his eyes would shift—go to one corner and then reset like a computer screen. His brain was not functioning correctly and it was difficult for him to get to sleep at night. The doctors we saw never asked about our mold exposure. One suggested Reagan needed counseling and another said we simply need to show “tough love” and make him go to school. I have a hard time thinking about those doctors and what might have happened had we followed their advice.

Reagan was athletic, outgoing, full of life. But after the mold outbreak he would stay in his bed, debilitated. His head would spin so much he couldn’t read or even walk. We gave him strong medicine to keep him from vomiting all night. Andrea held him and sang to him until he gave up and went to sleep. What he endured in those months is unimaginable. Those who have had vertigo before know what it's like. His was constant, 24/7. Something the doctors said was not possible.

As time went on, he was able to sit up. He could concentrate enough to use a flip video, a small, rudimentary camera that you can edit easily. When he got that, he sparked again. Some of the original video of him unable to walk is still on that camera and we hope one day to get it back. When we left the house, we left it behind.

Reagan has made a lot of progress in the past few months. We finally broke down and bought a cheap camera a couple of months ago and for his birthday he wanted a tripod. Then enter this friend with the video editing software. I don’t think he knew what he was giving to my son when he did that.

I found Reagan at the computer editing some music.

"How's that video software working?" I said.

"I didn't download it."

"Why not?"

"Because then he'd be charged for it."

"That's the point," I said. "He bought it for you. You're supposed to download it."

A big smile. "Oh."

Since then it has been almost impossible to detach his fingers from Andrea's laptop. Last night I watched his first big production. It was titled “Giant Trouble: The Remake” and starred Kaitlyn as the giant who destroys things by stepping on them. Most of it is shot from the floor looking up at the giant, Kaitlyn.

Colin plays a troubled scientist who is searching for a serum to shrink her. While she is smashing cities (paper cutouts), Colin is working on chemicals in the bathroom. He puts water, soap, contact solution, and toothpaste into a glass cup and stirs it with a toothbrush. (We had a talk about whose toothbrush he used.)


**SPOILER**


In the end, the giant shrinks and she and Colin go off, arm in arm, smiling.

There was music, end credits, the whole thing. It’s wonderful to see his creativity flourish and to see the excitement of his siblings as he says, “Want to make a movie?”

It feels like we're turning a corner.

With the help of some friends, of course.

CLick below to see the trailer for Giant Trouble: The Remake.