Same goes when I read about breakthrough studies where kids are being given small amounts of their allergen in an effort to desensitize them. I applaud the successes, of course, and I pray a cure is found sooner than later. But who are these test subjects? And more to the point, who are the parents who are entering their allergic kids into these studies?
I’m often asked about the likelihood of Lucas growing out of his peanut allergy or the potential for a cure. And I mostly respond that holding out hope for either of those miracles is self-defeating for me. It’s only a small percentage of kids who will outgrow these allergies, I’ll usually explain.
Besides, my survival/mama bear instincts tell me that Lucas will never qualify for an oral challenge or a desensitization study. I also can’t imagine ever inviting such risk into our lives, even for the greater good. Despite the medical community’s inability to test yet for allergy severity, I know from the experience of having to save my son’s life where he stands on the spectrum.
When I recently came across a newspaper article quoting a mother saying she would do anything to get her anaphylactic 8-year-old into a desensitization study even if it posed a life-threatening risk, I was floored. Like Lucas, this boy has had his share of emergency visits to the hospital and suffers from multiple food allergies. The article focused on there not being enough studies in Canada, which may be true, but I guess what struck me most is that there are parents clamouring to put their young children in such high-risk situations.
Our allergic kids aren’t living with a disease that’s going to kill them. It’s not like we have nothing to lose. Quite the opposite in fact. Our kids live in a world where it’s more like everyone else is carrying the deadly disease and it’s our job to keep them safe from it. Avoidance and vigilance is our chemo, public awareness and labeling our cure.
But don’t get me wrong, if there are parents out there willing or even eager to put their children forward in an effort to help find a cure, I am the last person who would blow the morality whistle. I’m just shocked and bewildered by them.
So back to the original question: Who would put their child at risk to help find a cure? Who would make the sacrifice so that my child could potentially live a risk-free, fear-free, allergy-free life?