Two years ago last month I wrote the first of two columns about my friend Becky Conrad of Burnsville. At the time, Becky had just been diagnosed with lymphoma of the brain, a rare form of cancer, and the diagnosis hit her hard. She'd already been through so much.
As a child, Becky endured many hospital stays for a blood and kidney disorder, and then at age 9, was diagnosed with retinitis pigmentosa, a deterioration of the retinas that left her totally blind before she was out of her teens. But Becky was determined to live a normal life. She married her childhood sweetheart, and a year later their son Joshua was born.
Even as a newborn, Joshua was sweaty nearly all of the time. Becky and her husband knew something was wrong, but for nearly a year, their concerns were dismissed as doctors believed it was nothing more than the standard new-parent fears, or that the blind mother was to blame for her son's failure to thrive.
Fortunately, though, a diagnosis was reached before it was too late. Joshua was found to have glycogen storage disease type 1, a hard-to-control condition so rare that few physicians - then or now - understand how to best treat it.
Basically, those who have glycogen storage disease can store the glucose their body needs in their liver, but they can't release what they've stored. It's kind of like having loads of money in the bank, except you can't get it out and spend it no matter how badly you need it. There's a long list of potential complications from GSD, involving everything from liver and kidney failure to high blood pressure to tumors, and diet must be closely monitored at all times.
What I've always found most bizarre about GSD, however, is that as part of his treatment, Josh had to consume cornstarch every four to five hours, around the clock, to keep his glycogen level in check. Since he was such a sound sleeper, Becky would get up at night to make certain he took it.
For 19 years, she closely monitored his diet and cornstarch consumption, and it was when she was taking his morning dose to him that she found he had died in his sleep.
When she called a few hours later to tell me what happened, I left work right away and drove to Burnsville. It's been a long time since I've experienced a day that felt so surreal, when I've felt so helpless and useless and completely empty of words. And it's been a long time since I've felt so angry over anything quite like I'm feeling over the unfairness Becky has been dealt.
Her blindness should have been enough. But then there was Josh's disease and Becky's cancer and the awful car wreck they had while she was still going through chemo. There was the winter storm that knocked out the power in their greenhouse and froze all their plants. There was her husband's emergency bypass surgery last March, followed by his employer shutting their doors before he'd recovered enough to go back to work.