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Continued: Minnesota mom: A rare glycogen storage disease

There is no treatment. Instead, we try to prevent the symptoms with intensive dietary therapy — avoiding sugar of any kind, including all fruit and most vegetables; no honey; no dairy, and limited proteins. Every four hours, we inject Bodhi with a cornstarch slurry that his body can use for energy between meals.

Every. Four. Hours. This is the area where most families with the disease suffer the most. Waking every 3½ or so hours to mix up and/or take cornstarch. Frantic calls to teachers. Setting multiple alarms. Feeling guilty every time we forget.

Every decision has become a calculation. Will errands or a playtime take longer than that? Do I need to bring his medical kit? Did I refill it? Will he be in any stressful situations — anything that includes physical activity, air travel, taking a test, hot weather, sitting in cold water — where he’ll need more cornstarch than usual?

Between those hours, there are other concerns to worry about — from his speech delay to deciding whether to eat an apple in front of him, to sorting out how much to tell him and when. But those are luxurious questions — the ones involving how to live with being a zebra, because it means he’s alive.

It sounds hyperbolic to say that these are life-and-death decisions, but our reality is living in a hyperbolic state. The weight of the choices and consequences take a toll, on relationships, on finances, on mental health. Many of these issues are not unlike what all parents feel as they weigh decisions for their child. But our mistakes have heightened consequences.

I don’t think any of us want a pity party or a free pass to cut corners. But I hope awareness can encourage compassion — something that doesn’t need to be rare.


Courtnay Peifer is senior wire editor at the Star Tribune.

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