Latest / 360 with Katie Woolf / Local woman Nadee, who has has a genetic disorder impacting her brain and spinal cord has written a book to help raise funds for a gene therapy trial overseas

Transcript

Local woman Nadee, who has has a genetic disorder impacting her brain and spinal cord has written a book to help raise funds for a gene therapy trial overseas · 360 with Katie Woolf

• 0:00
  Speaker 1: And in what is a bit of a first I
• 0:02
  Speaker 1: think for us here on the radio show, I am
• 0:05
  Speaker 1: really pleased to say that joining me in the studio
• 0:07
  Speaker 1: right now is a very impressive young woman. Her name
• 0:10
  Speaker 1: is Nadi and she has a rare medical condition. But
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  Speaker 1: she is on a mission to raise funds to take
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  Speaker 1: part in a gene therapy trial, defying the odds and
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  Speaker 1: writing a book.
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  Speaker 2: Now.
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  Speaker 1: Nadie is also joined in the studio by Sajish who
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  Speaker 1: is going to be speaking for her this morning. Good
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  Speaker 1: morning to you both. Thank you so much for joining us. Now,
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  Speaker 1: Geez tell us, can you tell us a little bit
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  Speaker 1: about Nadi's condition?
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  Speaker 2: Okay?
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  Speaker 3: Nadi Nadi is a well known person in this industry yep.
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  Speaker 3: And she is at twenty one years old and she
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  Speaker 3: lives with her parents in Durak and she's born as
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  Speaker 3: a normal girl. But unfortunately she had a fever and
• 1:05
  Speaker 3: she was about six or seven years then she had
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  Speaker 3: neurological issues. Then that moment on where she's always on
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  Speaker 3: wheelchairs and the betterden. But with her will and dedication,
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  Speaker 3: she can walk now and she is able to do
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  Speaker 3: a lot of things by herself. She's getting support from
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  Speaker 3: hands on people but she's doing a lot of things
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  Speaker 3: by herself.
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  Speaker 1: She's incredible. She's in the studio with us here today
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  Speaker 1: and I think this is the first interview you've done
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  Speaker 1: on the radio.
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  Speaker 2: Is Nash Now.
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  Speaker 1: I'm thrilled to have you in here because I know
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  Speaker 1: that you've written, or you're in the process of writing
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  Speaker 1: a book.
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  Speaker 3: That's correct, tell us about it. She has published a
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  Speaker 3: book called The Breakthrough, and she has written a lot
• 2:02
  Speaker 3: of things in that book. But I bought that book.
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  Speaker 3: I won't tell her dedication. She has a goal first thing.
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  Speaker 3: Then after that she got a dedicated She was dedicated
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  Speaker 3: into this book and she was doing this book for
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  Speaker 3: the last six months. So her perseverance is very important
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  Speaker 3: to complete that job. So I actually she is my
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  Speaker 3: model how to become a good professional worker in this industry.
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  Speaker 3: So she is a model to lots of people endowing
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  Speaker 3: as well as the people with the disability.
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  Speaker 1: Absolutely, and I know that Nadie is nonverbal, so I'm
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  Speaker 1: sure that our listeners are understanding, I said listening this morning.
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  Speaker 1: But when it comes to the fact that she has
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  Speaker 1: written a book, and as she've said there, you know,
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  Speaker 1: she's such a role model to people in the industry.
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  Speaker 2: That's correct. She is a role model.
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  Speaker 3: She has got a very strong mind and strong will,
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  Speaker 3: and once she has got a goal, then she will
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  Speaker 3: try everything to achieve that.
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  Speaker 2: And I want to say thank you to her family.
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  Speaker 3: Her family as playing a very important role in her
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  Speaker 3: life as well as of course we are also playing
• 3:17
  Speaker 3: an important role. But her family is very supportive, and
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  Speaker 3: her brother is very supportive. Her parents are very supportive.
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  Speaker 3: So she is really really model for this industry.
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  Speaker 1: Now tell me as well. Obviously this book is playing
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  Speaker 1: written in an effort to raise some funds to take
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  Speaker 1: part in a Jaine therapy trial as well.
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  Speaker 2: That's correct.
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  Speaker 3: She is planning to go to USA, am I correct, Yes,
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  Speaker 3: for the gineropy, and she's in the power of raising
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  Speaker 3: the fund for that. That's all her wishes to go
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  Speaker 3: to the I don't think we don't We know that one.
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  Speaker 3: We don't make lots of money out of it, but
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  Speaker 3: we are trying to raise some more money to achieve
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  Speaker 3: her gore.
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  Speaker 1: Yeah, and with this Gaine therapy, how like, how what
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  Speaker 1: could it do?
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  Speaker 2: I'm not a right person to answer to those because
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  Speaker 2: we don't want to talk back. That's all right, yeah,
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  Speaker 2: but I will leave it with them. She's typing something.
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  Speaker 1: Yeah, yep, so, and and it is something that would
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  Speaker 1: need to happen overseas as well as my.
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  Speaker 2: Understanding, that's correct.
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  Speaker 1: Yeah, which is a costly you know, it is a
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  Speaker 1: costly thing.
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  Speaker 2: Of course, it's too much. It's very expensive.
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  Speaker 3: We are trying to find some funding, but we are
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  Speaker 3: also waiting for the outcome from the issue.
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  Speaker 2: She was in the hospital for the last couple of weeks.
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  Speaker 3: But we are also waiting for the outcome of the
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  Speaker 3: hospital whether we can go or not.
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  Speaker 2: Yeah, she's writing something.
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  Speaker 3: Absolutely, it's therapics help her to reverse everyone of my
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  Speaker 3: everyone of my disabilities, so she ability help her to
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  Speaker 3: become a to be as normally.
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  Speaker 1: Yeah. I tell you what what an incredible person you are,
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  Speaker 1: and what an incredible thing that you are doing. And
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  Speaker 1: you know the fact that you have written this book
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  Speaker 1: as well. Where can people buy it or where can
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  Speaker 1: they get their hands on it and try to help
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  Speaker 1: raise some funds.
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  Speaker 3: They can get it from the hands hands on people office,
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  Speaker 3: or you can conduct us over the phone and we
• 5:29
  Speaker 3: can organize that one.
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  Speaker 1: Yeah. So so if they get in contact with us
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  Speaker 1: here at the radio station, we can certainly make sure
• 5:36
  Speaker 1: that they can get in contact with you.
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  Speaker 3: It's only ten dollars yep, so if you can give
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  Speaker 3: you some fundraising.
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  Speaker 2: This is only for fundraising.
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  Speaker 1: Yeah, yep. Now what you know, what's what's next? Obviously,
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  Speaker 1: you know, writing, writing the book and raising those funds
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  Speaker 1: and hopefully getting over for that gene therapy. But what's next?
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  Speaker 3: While she's writing, I understand she wants to go to
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  Speaker 3: Melbourne for further studies and she's going to the Melbourne University.
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  Speaker 3: That's what she's writing. She's planning to go to Melbourne
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  Speaker 3: University next month.
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  Speaker 2: Next to you.
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  Speaker 1: Yeah, and what are you keen to study? What are
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  Speaker 1: you going to study?
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  Speaker 2: I think it's a literature, But what do you want
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  Speaker 2: to study?
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  Speaker 1: Well, you are just finding.
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  Speaker 2: Out our English litera.
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  Speaker 1: Oh, how wonderful, how wonderful. Good on you, And you know,
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  Speaker 1: I love that you are not letting this condition stop
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  Speaker 1: you in any way, shape or form. You are continuing
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  Speaker 1: and and you are, you know, writing a book. I mean,
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  Speaker 1: most people could never even dream of doing something that incredible.
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  Speaker 1: So I really appreciate you coming into the studio this morning,
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  Speaker 1: and and to both of you for having a chat
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  Speaker 1: with me today.
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  Speaker 2: Thank you very much. For giving this opportunity.
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  Speaker 1: Thank you, thank you,