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Practice English Speaking&Listening with: Meet Katie Stevens

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Katie: My child, he was diagnosed

six years ago with bone marrow failure.

He wasn't responding to the front line therapy for it.

His doctor decided to do telomere length test.

Then we had a second diagnosis of an extremely rare disorder.

The telomere has the same function as an aglet of a shoelace.

If you can picture what an aglet does, it keeps the shoelace from

unraveling and the telomere does the same function essentially.

As you age your telomeres shorten but ours

are already starting off with extremely

short telomeres and so it's a multi-system

failure, multi-organ failure.

Team Telomeres has been around 10 years

and I took over three years ago.

We really put ourselves in the advocacy research outreach.

I have found that no matter what the diagnosis

is, we all have the same stories essentially.

Now we're finding overlap with other diseases

and I think that is a huge thing for

a rare leader to see the crossovers in certain

diseases and how can we work together.

Riley is an anomaly in our community.

He really is one of the healthiest patients.

He's 18 now, he just graduated high

school, he is four years post-transplant

from an unrelated donor and he's still here with us and he's thriving.

You share your story, one, to empower yourself, you share

your story so that you can connect with others and so

others can find you, and you share your story so that maybe

you're helping somebody else that's coming down the line.

The Description of Meet Katie Stevens