Story transcripts

Little Heroes

Friday, October 30, 2009

Reporter: Michael Usher
Producer: Hugh Nailon

He may be tiny, but the young bloke you're about to meet has a huge heart.

Leo Lagana is 9 years old yet he's only 79 centimetres tall - that's the size of your average three year old.

Leo has an extremely rare condition called Primordial Dwarfism. Unlike more common forms of dwarfism, his body is in perfect proportion - it's just that it's so very small.

Most kids like him are lucky to survive into their teens and very few live past 30.

But Leo's not sitting around feeling sorry for himself. Instead, he's off on a grand adventure with his family - a trip that Michael Usher found provided hope and comfort for this plucky little boy.

Story contacts:

Kidzwish Foundation
Chris Beaven
Executive Director
C/- Post Office
Jamberoo NSW 2533
Australia

Website: www.kidzwishfoundation.org.au or email chris@kidzwishfoundation.org.au
Ph: 1300 260 990 Fax: 02 4295 7502

Full transcript:

STORY -

MICHAEL USHER: Lake Illawarra near Wollongong is home to the Lagana family. Parents John and Pauline, and their children, 23-year-old Lucy, 17-year-old Matthew and young Leo.

LEO LAGANA: Hello.

MICHAEL USHER: But he is by no means the baby of the family. You see, Leo is 9 years old and he's the smallest boy in Australia. At 79 centimetres tall, and just 10 kilos, he's the same size as a 1-year-old.

PAULINE LAGANA: He looks like a toddler, Up until about last year, he looked like a newborn. I used to take him out shopping and I remember one lady stopped me once and said, 'Oh, a new baby,' and Leo smiled and all the perfect little teeth were there and she said, 'Oh! Not so new.'

LEO LAGANA: I've got primordial dwarf. I'm a primordial dwarf.

MICHAEL USHER: What does that mean?

LEO LAGANA: It means I'm a dwarf.

MICHAEL USHER: What has caused Leo to be so little is a medical mystery. Who's your favourite Mr Men?

LEO LAGANA: Mr Strong.

MICHAEL USHER: Mr Strong. Is that you? There was no family history, no warning signs. Show me you muscles. All the Lagana family knows is that primordial dwarfism is an extremely rare genetic disorder.

PAULINE LAGANA: The odds of two people conceiving a child like this is 1 in 130 million, so it is very, very rare.

MICHAEL USHER: That's extraordinary.

PAULINE LAGANA: Very, very rare. Both parents carry the faulty gene and they pass it on to the child.

MICHAEL USHER: Primordial means that from the first time Leo was measured in the womb, he was clearly undersized. At birth he weighed just 3lb 6oz, that's about 1.5kg. And he was 38cm long. The early years of his life was his biggest growth spurt. At two, he had reached 67cm and 7kg. But since then, he has grown at just over 1cm a year, and is now half the size of an average 9-year-old.

MICHAEL USHER: As well as the challenges posed by his size, there are serious health risks, too. Leo's veins are so small, he is at constant risk of having a stroke. So you've got this robust, gregarious personality.

PAULINE LAGANA: Attitude,

MICHAEL USHER: But his body's quite fragile?

PAULINE LAGANA: He is medically, yes, could be a ticking time bomb.

MICHAEL USHER: For years, Leo has been the only primordial dwarf in Australia. Isolated and starved of information, the family is heading to America to learn more about his condition.

LEO LAGANA: We're going to America three weeks.

MICHAEL USHER: Three weeks! That is going to be excellent.

LEO LAGANA: Excellent.

MICHAEL USHER: A three-week trip to America. What else are you going do there?

LEO LAGANA: Have fun.

MICHAEL USHER: Of course you're gong to have fun.

LEO LAGANA: Stay with my family, be nice with my family and I like my family.

PAULINE LAGANA: Thank you, Leo. Give me a big hug.

LEO LAGANA: I love my family.

MICHAEL USHER: It's a once in a lifetime opportunity for the Laganas to get valuable medical advice about Leo's health. And just as importantly, an opportunity for him to play with people his own size.

PAULINE LAGANA: They feel left out, isolated - and Leo has got to be the most isolated of all, over here all on his own. And he's going to go there and I want him to form life-long relationships with these kids. I want him to be able to form a bridge with these kids.

MICHAEL USHER: The Little People Convention is an annual gathering of the world's smallest people. 1,000 dwarves of different types gather for a week to share information, get the latest medical news and enjoy a whole lot of fun. For a few precious days, Leo is not the odd one out.

PAULINE LAGANA: I was blown away, he just really felt at home.

MICHAEL USHER: That must make you feel good?

PAULINE LAGANA: Oh, for sure. He feels like he finally belongs 'cause everyone else that he met, he only ever came up to their kneecaps.

MICHAEL USHER: And just as Leo is making friends here in New York, so too is Pauline.

PAULINE LAGANA: Keep in touch, now we can put a face to the emails.

MICHAEL USHER: After years of fighting her battle alone, she has found a new family in this impressive group of parents.

PARENT 1: It's always exciting to get those new ones and the parents, so we can really kind of plug them into what's happening with us, and you know that you aren't alone.

PARENT 2: And these kids just have a camaraderie, they just know they belong, They just know they belong, and it's a wonderful, heart-warming feeling.

MICHAEL USHER: It's like you found a whole new family.

PAULINE LAGANA: Oh, yes. A big extended family.

MICHAEL USHER: How tall are you?

KRISTIN RILEY: 3.5 feet.

MICHAEL USHER: Kristin Riley is proof these little people can live a full life. And when people see you for the first time, how old do they think you are?

KRISTIN RILEY: Maybe just 7 or 8 years old, maybe. Sometimes even 6, you know.

MICHAEL USHER: The fact is, Kristin is 27 years old a fiercely independent young woman, proud of her small stature.

KRISTIN RILEY: We like people coming up to us and not staring, or laughing, or anything like that. People need to look at people's faces, they don't understand that.

MICHAEL USHER: Look you in the eyes?

KRISTIN RILEY: Yes, look us in the eye, exactly.

MICHAEL USHER: Kristin is an inspiration for every other primordial dwarf and their families. She hasn't let her size stop her living a normal life. What do you talk about when you're amongst each other?

KRISTIN RILEY: I don't know, different things Everything everybody else talks about - dancing, boys - everything - clothes, shopping.

MICHAEL USHER: OK, you brought it up, you mentioned boys. Any news?

KRISTIN RILEY: I mean, everybody's looking for that special someone whoever it may be, how big or short - I don't care!

MICHAEL USHER: It's fairly obvious these little people face plenty of challenges in this very big world. But spend some time with them and you can't help but be captivated by these characters. How old are you, Nick? NICK WALKER: 17.

MICHAEL USHER: You're 17? You at school? NICK WALKER: Yes.

MICHAEL USHER: What do you like at school? NICK WALKER: Hot women.

MICHAEL USHER: Hot women? NICK WALKER: Yeah, woo hoo!

MICHAEL USHER: Nick Walker is just about to graduate from high school. He's 3 feet tall, with the spirit of a giant. But behind the big personalities, physically, primordial dwarves are very vulnerable. At birth, parents are told their kids will be lucky to reach the age of 30. Most of them die young because of strokes and aneurysms. That's what happened to Kristin's brother Kevin, who was also a primordial dwarf. He died at the age of 24.

KRISTIN RILEY: He was exactly like me, he was maybe two inches taller. He was like 42 inches, I'm 40. So you know, we got along really well and I love him so much, but he died of a brain aneurysm.

MICHAEL USHER: It sound so frightening. Do you worry about that?

KRISTIN RILEY: Um, I do every once in a while. When I turned 24, I was wondering, am I going to be like my brother? Am I going to die?" And then I'm like, you know what? I want to have, I want to go to the doctors, you know, I want to see what's in my head.

DR MICHAEL BOBER: What we've really tried to focus on over the last couple of years after hearing stories like that and seeing this happen to families, is we really are trying to be aggressive about going and looking for these problems and then once found, trying to treat them. I think that is a great way to put it - is that preventative medicine has the potential to prolong his life.

MICHAEL USHER: Dr Michael Bober is the world's leading primordial expert. He has discovered only recently that regular brain scans can save lives.

DR MICHAEL BOBER: We might have lost five or seven kids over the last year. And if we talk about there being 40, that's a huge fraction, and it looks like all of those children are going to be with us for at least the next couple of years, and we're going to keep looking and keep trying and hopefully, they'll all be living as long as you and me.

MICHAEL USHER: A week in the Big Apple has been life changing for the Laganas. Little Leo leaves New York for Wollongong with a big future. You've discovered some new hope, I think, since you've been here, haven't you?

PAULINE LAGANA: It's like someone has switched on the light and bathed the whole situation in light. It's good.

MICHAEL USHER: Really?

PAULINE LAGANA: Yes.

MICHAEL USHER: Why is that?

PAULINE LAGANA: Just to see how everyone else is going and you have an image of what the future holds for Leo.

MICHAEL USHER: And that future is?

PAULINE LAGANA: Bright, very bright.

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