Page 2 of 2 Previous

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.

  • related content

  • Bodhi Petcharawises, Thanksgiving week 2012.

  • Logo for Rare Disease Day, 2013.

  • get related content delivered to your inbox

  • manage my email subscriptions

ADVERTISEMENT

  • about opinion

  • The Opinion section is produced by the Editorial Department to foster discussion about key issues. The Editorial Board represents the institutional voice of the Star Tribune and operates independently of the newsroom.

  • Submit a letter or commentary
Connect with twitterConnect with facebookConnect with Google+Connect with PinterestConnect with PinterestConnect with RssfeedConnect with email newsletters

ADVERTISEMENT

ADVERTISEMENT

ADVERTISEMENT

 
Close