A few months ago, in January, we did an episode about one woman's quest to develop a cure for her

son's rare disease.

Amber freed his twins, a girl named Riley, and a boy named Maxwell.

Riley is healthy, but her brother Maxwell was born with a rare genetic disorder discovered so recently

it doesn't have a proper name.

Amber has done everything she can to help her son.

She became a self-taught expert in genetic disorders. She raised more than a

million dollars. And she convinced established scientists to take on her son's case and develop

a treatment using cutting edge gene therapy technology.

And when we last spoke, a treatment for Maxwell seemed within reach.

Amber had coordinated with scientists in China to send genetically engineered mice to the U.S.

where they would be the first test subjects for a potential treatment.

And the mice were breeding and we were just about to begin experiments on those mice.

Were you optimistic about the future at that point?

So optimistic.

Nothing could hold me back.

I was sure my son would be treated this year. And then the pandemic hit.

University research labs mostly shut down and efforts to help kids like Maxwell

have been put on pause. I was just so heartbroken because we have made record-breaking progress.

I never anticipated or thought something like this could happen. But also it was a state of

devastation like I felt when Maxwell was originally diagnosed that lightning hit us. The unthinkable happened and

here lightning has hit again a Black swan event for the world that no one could have anticipated.

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