Friday, May 22, 2015

Fear and Hope, James's Perspective

James is participating in a Read-A-Thon on Tuesday, started by a remarkable young woman who is in a peanut clinical trial. Technically, the Read-a-Thon is Monday, but we will be enjoying the company of our family. On Tuesday, we will be enjoying the quiet of our car on the way home, perfect for long stretches of reading.

I asked him to write the description on his page, answering the question as to why raising money for food allergy research is important.

Having anaphylaxis used to truly scare me, every day, all the time. I wondered why people couldn’t just create nutritional pills to give you your food. That would have already made me feel ten times safer than the alternative of eating regular food. But now I’m getting allergy treatment with Dr Li and I’m very thankful for it because worrying isn’t as much a big part of my life as it used to be. I can feel safe about about eating things I’m familiar with because I know the treatment will at least keep me from getting any serious reactions.

I didn't edit anything he wrote, so I want to be clear, the number of food allergies hasn't decreased. He is eating a wider diet because he isn't scared.

To be scared of food. To have a child scared of food. It's a heavy burden.

Obviously, James is in treatment with the goal of more than freedom from fear. But, when we started treatment, we told him, "This may not be a cure. At the end, you may not be be able to eat your allergens. If we do this, what is the least that you will be satisfied with?"

"I don't want to be afraid anymore."

This is why more research is needed. People should not be afraid to eat.

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