Reporter: Michael Usher
Producer: Phil Goyen
We knew her as Reggie Bird, the down-to-earth Tassie battler on Big Brother. When you meet her, you can see why she was the show's most popular winner, ever.
Reggie's been through some tough times and she's managed to survive them all with a smile.
But now she's going to need all the courage and strength she can muster. She's losing her sight, in fact, she has only 10 per cent vision, which makes her legally blind.
Even more worrying, her little daughter, Mia, could suffer the same fate. As you can imagine, it's been a trying time, especially when Mia's DNA test results finally came in.
To book Lorin Nicholson for a speaking engagement or to buy one of his albums head to… www.lorinnicholson.com
For information about current research and the Australian Inherited Retinal Disease Register and DNA Bank, click here.
This research is entirely supported by grants from the Western Australian Retinitis Pigmentosa Foundation and Retina Australia.
How can you participate?
If you wish to be involved in this work or would like to make a donation, please contact Retina Australia on 1800 999 870, or the WARP Foundation (Western Australia) on 08 9227 7585.
STORY - MICHAEL USHER: For Reggie, these are special family moments. She's taking everything in, capturing every detail of this day in her memory. Soon, a visit to Dreamworld, with husband Dale and daughter Mia, will be almost impossible.
REGGIE BIRD: (referring to the pram she is pushing) This is like my guide dog.
MICHAEL USHER: This is how you get your way around you don't bump into things?
REGGIE BIRD: But, even when I'm in the supermarket I bang into people in the supermarket.
MICHAEL USHER: The popular winner of the reality TV show 'Big Brother' is racing to make the most of every moment because at just 35, Reggie's going blind.
REGGIE BIRD: My legs would be covered in bruises just banging into everything.
MICHAEL USHER: So, it was beyond thinking you were just clumsy?
REGGIE BIRD: Yeah, I knew, I thought, "My eyes are getting bad." That's when it really hit me - that, "Gee this is real, it's happening."
MICHAEL USHER: It really hit you.
REGGIE BIRD: Yeah. That's when it hit me. I'm actually going blind.
MICHAEL USHER: Reggie's battling a devastating eye disease. You wouldn't know it by looking at her but most of her vision has gone, leaving her with just 10%. Reggie is legally blind. So, just how bad is Reggie's vision? Well, most of you can see me and all of this view, pretty clearly but take a look through Reggie's eyes and this is what you lose. It's like looking through a tunnel. Nothing to the sides, nothing below, no periphery vision at all. Eventually, that narrow window will become a blur. Are you thinking to yourself, "There's a chance I may not see my children grow up?"
REGGIE BIRD: I've gone through that with Dale and I think, "Hopefully I'll still be OK, to take Mia to school "when that time comes." So, um, I don't know.
MICHAEL USHER: What's worse - this horrible disease is hereditary which means little Mia could also go blind. And Reggie may be passing it on to her unborn child, due in just seven weeks. What challenges do you think you'll have when the new baby comes along?
REGGIE BIRD: I'm a bit worried that when I'm carrying the baby that I'll end up tripping over something on the floor, that's one of my main concerns.
MICHAEL USHER: Tonight, we're there as the family undergoes DNA testing to see if the blindness will effect the next generation. It's a long way from the days when Reggie won hearts all over Australia on 'Big Brother', as the down-to-earth girl from Tassie. She walked away $250,000 richer and an instant celebrity.
REGGIE BIRD: I couldn't walk down the street without being mobbed and I remember I had two security guards live with me for about a week.
MICHAEL USHER: Really?
REGGIE BIRD: I just couldn't go anywhere without being mauled by people.
MICHAEL USHER: That was 2003.
REGGIE BIRD: (in helicopter) This is weird, because I'm afraid of heights.
MICHAEL USHER: Now you tell us you're afraid of heights.
REGGIE BIRD: Yeah, I'm afraid of heights.
MICHAEL USHER: Well, that house down there made you a star, didn't it?
REGGIE BIRD: Yeah, it did, funny.
MICHAEL USHER: Today, she's fulfilling another dream - a flight over the 'Big Brother' house and perhaps her last chance to see it from the air before she loses her sight.
REGGIE BIRD: ..something blue over there...
MICHAEL USHER: So, you can see the blue of the pool but you can't quite make out the shape?
REGGIE BIRD: Yeah, yeah, I don't know whether it was a pool.
MICHAEL USHER: What's your greatest memories looking down on that house now?
REGGIE BIRD: Just fun, just so much fun. I never wanted to leave the place when I was in there, I didn't want to leave it and come out to the scary world again.
MICHAEL USHER: Scary world, and was it?
REGGIE BIRD: Yeah, it was really scary.
MICHAEL USHER: Fame wasn't always kind to Reggie. Her marriage failed and the winnings were lost as those around her took advantage of Reggie's good nature.
REGGIE BIRD: I've had my down times but you've go to get over that and move on.
MICHAEL USHER: When she married fireman Dale Sorenson and started a family, it was meant to be Reggie's new beginning.
REGGIE BIRD: I had no direction in what I was doing with my life because after 'Big Brother' I was just lost. Until I met Dale, then it all just changed, I had direction, he gave me direction.
MICHAEL USHER: But even then there were signs Reggie was to face yet another challenge.
DALE SORENSON: Just day-to-day tripping over Mia's toys, walking into the kitchen bench, even, she can't see it at waist level.
REGGIE BIRD: He was hoping I'd lose my sight faster so he could sneak a woman into the house without me seeing.
MICHAEL USHER: Oh, come on! You can still see well enough?
REGGIE BIRD: Oh yes, I've seen his eye wander.
MICHAEL USHER: But this was serious. 18 months ago, Dale convinced Reggie to have her eyes tested and she was diagnosed with a disease called retinitis pigmentosa. It slowly destroys the retina and is the most common cause of blindness in young people. There's no cure. Today, she's having more painful tests.
DR BOB BOURKE: Particularly poor with your lower field of vision so, things below central vision you could trip over very easily.
MICHAEL USHER: And ophthalmologist Dr Bob Bourke has some bad news. Cataracts are beginning to steal the little sight she has left.
DR. BOB BOURKE: There is a significant enough cataract there to start blurring your vision. It's a little bit like somebody spray painted some white paint on the back of your lens.
REGGIE BIRD: I start saying to myself - "I'm going to be blind before I'm 50." I keep thinking that's going to happen. But, I don't know... I'm just hoping it's not going to happen.
MICHAEL USHER: It's getting worse though, isn't it?
REGGIE BIRD: Yes, yeah.
LORIN NICHOLSON: Reggie, nice to meet you.
REGGIE BIRD: How are you?
LORIN NICHOLSON: Really, really good. What about you?
REGGIE BIRD: Yeah, good thank you.
LORIN NICHOLSON: Thanks for coming out today. Like, I wouldn't know who you were really, until you started talking.
REGGIE BIRD: (Laughs) My voice? My bloody voice, isn't it terrible.
MICHAEL USHER: Lorin Nicholson knows what Reggie's going through.
LORIN NICHOLSON: I was born with my eyesight problem, so I've had a lot of years practice.
MICHAEL USHER: He's had retinitis pigmentosa since birth.
LORIN NICHOLSON: I think there is going to be a grieving process for anyone going through what Reggie's going through now.
MICHAEL USHER: But it hasn't held Lorin back. With just 4% vision, he's ridden across the Great Dividing Range, and played guitar for millions on 'Carols By Candlelight'.
LORIN NICHOLSON: It's easy for somebody sometimes to look at me because of the nature of the work that I do now, and think - "Gee, what a positive guy Lorin is, he's just got it all together. "He copes well with it and he can achieve anything." I don't want to paint this pretty picture for everybody because it's not something you'd ever want to wish on anyone. And certainly, if I had the choice, I'd rather be able to see.
MICHAEL USHER: Lorin tells his story to thousands of students every year. And Reggie takes some comfort from his achievements. But there are some adjustments she's not quite ready for.
LORIN NICHOLSON: You got left foot, across, right foot, across, and you just kind of keep your arm a little relaxed here left, right, step, swing.
REGGIE BIRD: Oh, this is hard.
MICHAEL USHER: That's a bit confronting, isn't it? I can see it in your face, just dealing with the idea of having to use a cane. A bit hard?
REGGIE BIRD: Yeah, and I was just watching Lorin move around then, he was looking for something in the corner there and I was thinking, "Oh goodness," like, he's really, really finding you know, feeling around and I was thinking, "Oh gee, I hope, I hope I don't get to that stage."
MICHAEL USHER: This is what Reggie fears. Using specially-designed glasses I can see what Lorin sees and what Reggie may face in the future. Suddenly, my world shrinks. My confidence disappears, everything's a confusing blur of shapes and washed out colours. I have no idea where I'm walking. Before her sight completely degenerates, Reggie's hoping for a miracle and this might be it. In the University of New South Wales Professor Nigel Lovell and his team are working on a bionic eye.
PROFESSOR NIGEL LOVELL: There's about a million wires there and 10,000 transistor devices that make up this implantable neuro-stimulator.
MICHAEL USHER: So, that's it, in the very middle there? PROFESSOR NIGEL LOVELL: Yes, exactly. MICHAEL USHER: That is all of this?
NIGEL LOVELL: Exactly.
MICHAEL USHER: That chip is implanted behind the eye. A small camera mounted on glasses transmits signals to the chip and the images are then relayed to the brain. REGGIE BIRD: So someone who's totally blind will be able to see shapes?
PROFESSOR NIGEL LOVELL: Exactly, that's what we hope.
REGGIE BIRD: Wow!
MICHAEL USHER: Human trials could start in just a couple of years.
PROFESSOR NIGEL LOVELL: We'd love to be there on that first implant surgery and flick the switch and stimulate someone's eye and actually have them perceive a spot of light. It will be an amazing feeling to know the device actually works.
REGGIE BIRD: It's bizarre. Bizarre even how your brain works to think it all up.
PROFESSOR NIGEL LOVELL: Sometimes it works.
REGGIE BIRD: It's like, how do you come up with this stuff?
MICHAEL USHER: It's pretty amazing, isn't it.
REGGIE BIRD: There's hope yet.
MICHAEL USHER: But Reggie's greatest concern right now, is for Mia and her unborn child. This disease is caused by a genetic flaw and there's a chance Reggie has passed it on. Only cutting-edge DNA testing will tell us for sure. As part of a national research program into retinitis pigmentosa, Reggie and her family will find out today, and everyone's nervous. Reggie, how are you feeling about getting these results today?
REGGIE BIRD: Anxious! A bit anxious.
MICHAEL USHER: How important is it to find out about Mia and whether she's affected?
REGGIE BIRD: I would feel terrible if it's come back bad news that she's going to have the same disease and eventually lose her sight.
MICHAEL USHER: As yet, Genetic Counsellor Lisa Kearns hasn't been able to isolate the flawed gene causing the disease.
LISA KEARNS: We know that it is 22 gene changes that it could be, and we've been able to exclude eight. So we haven't found that gene but we're still working really hard on that.
MICHAEL USHER: But, she has been able to find out what the future holds for Mia.
LISA KEARNS: The risk for Mia developing retinitis pigmentosa is actually very low, less than 1%
REGGIE BIRD: Oh, that's good. That's good news.
MICHAEL USHER: Finally, some good news for Reggie and her family. There's no doubt Reggie's got tough times ahead but don't feel sorry for her because she doesn't. Just like she did on 'Big Brother' Reggie's making the most of life.
REGGIE BIRD: I'd like us to go away to Europe or somewhere together, before... I always have those thoughts like that in my head, like, "I want to see this and that, before it all happens."
MICHAEL USHER: See as much as you can now?
REGGIE BIRD: See as much as I can, yeah.
MICHAEL USHER: How important is it to stay positive?
REGGIE BIRD: I guess you've gotta be, you have to be.