This TED Talk features citizen biomedical researcher Sharon Terry, recorded live at TEDmed.

2016.

The best Christmas my children ever had

was also the worst Christmas my husband and I ever had.

Elizabeth, age seven, and her brother, Ian, age five,

couldn't imagine why they were getting everything they wanted for Christmas.

The reason Santa was so generous was because something my husband Pat and I knew

and the kids couldn't comprehend, something that we had just learned and it terrified us.

This was 1994, and the story actually starts a few years earlier.

For a couple of years, I had noticed a rash on the sides of Elizabeth's neck that looked like prickly heat.

For those same years, my father and brother both died of cancer, and I was probably overanxious about illness. The doctors assured us there was nothing wrong,

and I shouldn't worry, but I wasn't so sure.

And so without a referral and paying out of pocket,

I took Elizabeth to a dermatologist.

She was probably just allergic to something,

but why did it appear just on the sides of her neck

this rash?

So it's two days before Christmas, 1994, and the dermatologist takes a quick look at her neck and says,

she has pseudo-zantoma elastikum.

And then he shuts off the lights and looks in her eyes.

It turns out by chance this dermatologist also trained in ophthalmology.

Our lucky day.

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