WEBVTT

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Anne: At first he wasn't sure
that we should have kids,

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and I'm like, “what are you talking about?”
He's like, “well, you know,

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what if the kids are DeafBlind?”
I mean, he had concerns.

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“Are you going to be able to do it?”

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You know, and I basically did say,
“are you saying that I shouldn't be alive?”

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I mean, we had some heated
discussions about it.

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Not heated, but...

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...well, yeah, heated.

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Renee: In my family,
on my father's side,

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there are three brothers
and sisters that have Usher.

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Two females and an uncle.

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So it's a total of three individuals
who have Usher.

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Now, in the entire family

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there are seven individuals who have Usher,

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and that includes me as well,
a younger brother,

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and we're both deaf with Usher.

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Brian: When two people are carriers of Usher syndrome,

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it’s a recessive trait and

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there's about a 25% chance
of passing it on,

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and I happened to be the one

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member of my family with Usher syndrome.

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As far as we know, nobody else in
the family has an official diagnosis

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of Usher syndrome, although obviously
my parents were both carriers of it

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and probably had family members
with it at some point.

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So I happened to be the lucky one that has it.

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Renee: So before we got married,

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I do want to say thatwe went
to several workshops on Usher.

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They gave us genetic
counseling as well.

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So we both did that together
and we did our research

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because we said, “what if we decide
to have children someday?”

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So we started to get a lot of information
on genetics, learned a lot.

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And my wife actually,

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her genetics are dominant.

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I have the recessive gene,

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so there's a less chance or probability
that they will have Usher.

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But at the same time I'm a carrier,

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I have 25% possibility that a
child would come out with Usher.

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Anne: My husband is sighted
and hearing, he's a mechanic.

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You know, we talked about having kids.

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He was nervous about it.

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He thought we should
have genetic testing.

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And, a couple of things:

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one is, I said, “both parents have
to have Usher syndrome,

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and you do not, you know,
so we'll be fine.”

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But also I was kind of like...

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...I would still be born.

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I would still want to be born and
have my life, even if I had known,

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you know, my life is still worth it
and I still love my life and I have a great life.

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So, you know, I wouldn't

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not have a kid because
they have Usher syndrome.

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I think it was a concern
to my husband, Jason,

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to me, it wasn't really a concern.

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And I don't know if that’s good
or bad or normal, I just...

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Brian: After conception with the first child,

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we did do the genetic test and
she’s not a carrier of Usher syndrome.

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It did not affect our decision
whether or not to have a child.

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We went forward with the decision

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knowing that it was a possibility.

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I'm currently married with two daughters

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and, as far as we know,
our daughters don't have it either.

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Everyone in my life is typically sighted
and typically hearing.

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Renee: I have four children
and they're not DeafBlind.

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They're all hearing

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They're all hearing
and they're good.

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Brian: I live a happy and fulfilling life.

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And so, if I had a child with DeafBlindness,
I would be perfectly okay with that.

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And this might not be a popular opinion,

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but I think for me there is

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a sense of pride in being DeafBlind.

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It would have been nice
to have a child with DeafBlindness.

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There are things I've learned
throughout my lifetime

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that I could share with that particular child.

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In a lot of ways they relate to their mother
more in the way that they do things.

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Renee: They would be a part of the
deaf community, you know,

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if they were deaf, then they could
relate to me, so that’s...

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...that's good.

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If they were DeafBlind,

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I'm not sure.

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I have so many experiences.

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I have the pros and the cons of both.

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So it's definitely a tough life to navigate,

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being DeafBlind,

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so I'm not sure what to answer.

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Anne: I didn't have concerns that my kids

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were going to have Usher syndrome or be DeafBlind.

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I really didn't.

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I think,

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knowing that I grew up,
I had an amazing family,

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I was blessed. I had an amazing
upport system and I grew up fine.

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And I do know people who
won't have kids because of it,

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and to me that's sad.

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I guess I understand they're scared,

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they're worried about the challenges,
and I'm not going to lie,

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I mean, there are some challenges
that make it more difficult, but I wouldn't

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change it.

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