Two Little Boys at the Door

The doorbell rang and I answered it to find two little boys--about 8 years old--at the door, clipboard in hand. My assumption was that they were selling something--cookies, candy, magazine subscriptions--anything was possible. I was sure of one thing: they were neither Jehovah's Witnesses nor Mormons (too young). So I prepared myself to hand over $5 or $10 for something I neither wanted nor needed just because I was always so grateful when my own children years ago received a polite reception when they were going door to door. Imagine my surprise when I tuned in what they were saying.

It seems that their teacher had just lost a baby to a rare disease, and they had learned that if the appropriate screening had been done for the baby, death was by no means certain. The boys were gathering names for a petition to lobby legislators to institute mandatory testing of newborns for this rare and fatal disease. They did not ask for money, only for my signature.

I was surprised again to hear an extensive news story on San Antonio television about the family a few days later. The malady, I learned, is Krabbe's Disease, one of a rare group of genetic disorders called leukodystrophies. The boys had good information: in fact it does respond to an infusion of umbilical stem cells if treatment is started before the symptoms manifest themselves.

I do not know if the PKU screening require by law in Connecticut (which screens for a number of different diseases) includes this group of leukodystrophies, but I will be interested in seeing if there is any official response to this grassroots effort to implement testing in Austin. The San Antonio station forwarded the story on to area legislators and promised to report back to listeners any responses received.

While I grieved for the sadness of these parents, I marveled again at the two little boys who were inspired to do what they could in their own way for their teacher.