Meet the Echandi Family

FEL:
My name is Fel Echandi and you know, my son Fiach has hemophilia type B, and what inspires me more is to help other parents with the same condition to advocate for themselves for the better of their kids.

FIACH:
My name is Fiach, and I’m the one with hemophilia, Factor IX severe B. And one thing that inspires me about hemophilia is to keep moving forward.

[TITLE CARD] What has the experience taught you?

LAURA [WITH SUBTITLES]:
I was interested in learning right away about everything that had to do with hemophilia, and that’s what helped me to understand that it’s not an illness, but it’s a disorder.

FEL:
Gets older, gets better. That’s what I tell all of the parents. As they get older it gets better.

Because then you know, you get more support and then you start knowing more about the community and they start helping you more, and you know, there’s a lot of people that help you out you know, to overcome, and you know, that’s important.

FIACH:
I had to overcome some things, but they didn’t really get in the way, because it’s just one of these things that don’t bother me as much.

[TITLE CARD] What are some of the challenges of living with hemophilia?

FEL:
Yeah, it changes. You know, when I first, I was not that much involved in it. As I progressed, you know, as he gets older, then you get more challenges with school, you know, people that don’t seem to know about hemophilia, they you know, they just think that, you know, oh, if he cuts, that’s it, he’s gone. You know, it’s not like that.

So you know, the term I use, like if he gets cut, he takes more time to, you know, to you know, to heal. It’s not that he bleeds more, you know. But other than that, you know, it helps me out to reach out to parents and you know, and help them out.

[TITLE CARD] What keeps you going?

FIACH:
For me, it kinda gives a positive response.

It gives me like, if I want to exercise, I have to exercise so I know I could get fit or work out.

[TITLE CARD] Anything else?

FEL:
The thing is, thanks to the old generation, we have to thank them.

And they help out the new generation.

I hope that this generation also helps the other generation that comes in the back.

FIACH:
One thing I would like to set the record straight is, I’m just like any other kid…

And I just have some challenges. So that’s all I think it’s gonna be.