Tip:
Highlight text to annotate it
X
KATIE WILLIAMS: I was about three when the family noticed something was wrong because
I kept eating and eating on my birthday party. I was the only one left, sat sitting down
eating.
GILLIAN DANGERFIELD: They told us when she was diagnosed at four she'd eat herself to
death by the time she was 20.
TIM NOONAN: Katie Williams is now 31 and forever hungry.
KATIE: I'm always eating. Never stay full for long.
TIM: Katie was born with a rare genetic condition called Prader-Willi Syndrome.
KATIE: If I get too big, then I could die.
TIM: It compels her to eat constantly and never feel full. If Katie was given complete
freedom, what would happen?
GILLIAN: She would eat herself to death.
TONY: We knew there was something wrong with her the moment she was born. She was an emergency
Caesarean and then she was whipped off, straight off to intensive care, so we knew right from
the word go there was a major problem with Katie and they told us in the first day or
two that she'd be a vegetable.
GILLIAN: She's just completely obsessed by food. From nursery age, every drawing, every
painting, every piece of work, every story all had food in it. They would all - whatever
the teddy bears were doing, they'd have a picnic.
TIM: How capable is Kate of controlling her own weight?
GILLIAN: Not capable. No. It's not there. That bit that tells you 'no', that bit that
stops you, is missing. It's just not there. I'm trying - I can't think of an analogy of
what it's like. It's like asking you to stop breathing or stop going to sleep at night.
It's just completely a natural instinct. The bit that governs it, the bit that would say
'no', isn't there.
TONY: Prader-Willi is an unfortunate thing that happened. It could have happened to someone
else. It happened to Katie.
TIM: The syndrome was given a name in 1956 but long before that, it was documented in
Renaissance paintings. When a baby with Prader-Willi is conceived, the 15th chromosome is damaged
or missing. It affects the part of the brain that controls hunger. The result - a constant,
uncontrollable urge to eat.
KATIE: Sometimes I feel like two people - the good and the bad. There's so many things that
I can't have but I do love crisps, chocolates but my daily allowance is 1,300 and there's
far too many calories that I'm allowed per day. But it's hard to resist chocolate and
I do love dairy milk.
TIM: Should you be having that?
KATIE: No, I shouldn't be having it because it's high in calories.
GILLIAN: I can watch the struggle in her as she battles.
TIM: Did you struggle at school?
KATIE: Yeah.
TIM: Were you bullied?
KATIE: Quite a lot, yeah. I was treated like a dustbin.
TIM: Like others with Prader-Willi, Katie has learning difficulties and is emotionally
immature. Despite this, she's one of the few people with PWS to have a full-time job. She's
a cleaner in a school for handicapped children. And when the kids have gone home, she dances
like no-one's watching. Another symptom of the cruel disorder is infertility.
GILLIAN: She would dearly love to be able to have a child. And even though I've brought
her up from a toddler knowing that she could never have children, I think that's probably
one of the hardest things that she's ever had to deal with.
TIM: Katie's parents are now divorced and share her care. She lives five days a week
with her father and weekends with her mother.
GILLIAN: Yes, yeah, that'll be quite nice. It's like living with somebody that's an addict.
Have you got it? That ought to be your last, because you've had quite a few now, and you
had the pears as well. Her whole life is governed by when the next meal's coming and what she's
going to eat for the next meal and she'll finish breakfast and she'll be talking about
what she's going to have for lunch and then she'll finish lunch and she's already thinking
about her evening meal.
KATIE: First time I've seen beef pink.
GILLIAN: And so you've got this balance the whole time between how much she can have but
constantly waging the war with how much she'd like to have.
TIM: If you had money, would you...
KATIE: Then I would go out and spend it on things that I can't normally eat like chocolate
and biscuits and cakes.
TIM: Katie's money is managed carefully by her father. Have you ever stolen money from
your dad?
KATIE: Yes. Quite a few.
TIM: For food?
KATIE: Yes.
GILLIAN: She was slim...
KATIE: Make it two, actually, 'cause I like that flavour. Oh, they come in two.
GILLIAN: ..but unfortunately, we live in the real world and the real world is full of food.
And she has to battle with that every day. I can't imagine, I can't imagine what it must
be like to have that level of temptation to deal with. She is putting on weight slowly
and surely and it's beginning to affect her now. Everything that's been done physically
to help her is not working.
TIM: Every morning, Kate records her weight. How much do you weigh today?
KATIE: Today I weighed about 132 kilograms.
TIM: Does that upset you?
KATIE: I do get down when my weight's high. I do tend to nibble because I'm a bit miserable
or upset and then it just goes around in a vicious circle.
TIM: At Cambridge University..Katie is giving herself to science to find a cure for this
complex disorder.
GILLIAN: People with Prader-Willi Syndrome don't feel pain in the same way. They don't
have a vomit reflex so she wouldn't be sick if she ate too much so she can't have a stomach
band because her pain threshold isn't normal and a stomach band could burst and people
with Prader-Willi syndrome wouldn't know that it had burst. So we're running out of options
now and the weight is gradually swallowing her up. I desperately would like to see her in some
care.
ZOE: From the minute he walked out my front door and was on his own or was with someone
else, I had no control. If it was summer time and there was fruit on trees, he'd climb the
tree and eat most of the fruit on the tree. He'd go to supermarkets and go through the
aisles, eat what he wanted and just leave. He would eat frozen mince, frozen chicken,
anything in the freezer, actually. He'd just get it and just eat it. He wouldn't even wait
for it to defrost, he'd eat it frozen. How, I don't know.
TIM: James Papadopoulos was the youngest of three children. Born in Melbourne, he was
12 when he was diagnosed with Prader-Willi Syndrome. Zoe is his mum.
ZOE: He was a happy child until after he was diagnosed. Then he started becoming angry.
Unfortunately, because he was diagnosed so late in life, we could not put lockson the
fridges, could not put locks on the pantries. We did put a lock once, but he just took the
bolt cutters and just cut it off. It's a horrible disorder because they live and breathe only
for food. How to get the next meal, how to get the next piece of fruit or anything. Their
mind is only on food. Nothing else matters in life - food.
TIM: James's father was his best friend but in 2009, his dad died suddenly.The grief was
too much for James. At the age of 22, he made the decision to eat himself to death.
ZOE: Life to him meant nothing now, without his dad. He adored his dad, his dad adored
him. Now he didn't have his dad. He wanted to be with his dad. He was on a mission, and
it took him 2 years, 4 months and 12 days to accomplish that. He refused help, he didn't
want any medical attention. He just told the ambulance people to go home. "Leave me alone."
Prior to him passing, he had put on probably about - I know it's going to sound awful - 40
kilos in about 10 days.
TIM: Did you try to stop him?
ZOE: No. That's what he wanted. All my life I've been stopping him. It was time he got
his way. That's what he wanted. I'm not happy that's what he wanted, but...he was happy.
(VOICE ON TAPE): Hi, this is James Papadopoulos. I'm not here at the moment to take your call,
so can you please leave...
TIM: James died last October from a cardiac arrest. He was 25 years old and 160 kilos.
In Australia, he was without help. In Britain, it's a different story.
LAETITIA: My parents said, "We don't want you to die."
TIM: And so they sent you here? How long have you been here?
LAETITIA: About 13 years now.
TIM: And how long do you intend to stay?
LAETITIA: For the rest of my life.
TIM: This extraordinary facility is one of nine scattered across the UK. They're called
Gretton Homes. Here, they've discovered a way to help - a radical approach to extreme
weight loss for those with this extreme condition. How many people live in this house?
GAIL REILLY: 17 people with PWS.
TIM: What are some of the most touching things they've said to you?
GAIL: "You've saved my life." That's been a really... and that was really heartfelt.
"If I hadn't come here I'd have died. "You've saved my life." And I'm going to cry now,so
stop it! (LAUGHS) It a tear to your eye, that does.
TIM: Those who want to cheat the system find it almost impossible to do so. Anywhere there's
food, there's padlocks.
DONNA RIGNEY: Basically have to keep the bins locked up with a combination key because they
would actually go through the bins and search for food.
TIM: To what extent will they go to to get food?
GAIL: Some people will eat inappropriate, inedible things. Other people will food-seek
after meals. If there's a crumb on the floor, they'll try and pick it up.
TIM: Do you see it as sad, or...?
GAIL: They just can't help it. That overwhelming desire to food-seek is there and there's nothing
they can do to stop it. And, yeah, it is quite sad.
PATIENT: I love food.
TIM: You love food? What are your favourite foods?
PATIENT: Spaghetti bolognese.
TIM: The staff use psychology to outsmart the disorder. They overload the plates with
low calorie foods like vegetables. It looks like a lot, but it's not. But not everyone
is fooled.
GAIL: Some people will accept it to start with and then start to challenge the service.
Other people will come and challenge it from day one.
NURSE: Could you leave the kitchen for me? Out you come, sweetheart. We can't have too
many residents in here. Yeah, I can't have you in here, darling. Rules is rules. You
going to come out? Rules is not rules. It is in here, sweetheart. Please don't ask staff
for extra food while you're here, 'cause you'll not get it.
TIM: To save her from herself, Katie Williams was brought to a Gretton Home by her parents.
They hoped she'd adjust to the rules.
NURSE: While you're with us, you need to try and work to the same regime as what we do,
OK?
KATIE: I can't.
NURSE: You don't even think you can manage for 24 hours?
GILLIAN: She was only in Gretton Homes for one night. She screamed and she shouted and
she had a full-blown temper tantrum like a 2-year-old.
KATIE: I said it was like a prison cell and it is like a prison cell!
NURSE: It's similar to going through cold turkey with a *** addict, I would imagine.
So, yeah, it's very difficult.
TIM: But it does work. This is Laetitia Brown 10 years ago. This is Laetitia today.
LAETITIA: I was 167 kilos.
TIM: And now?
LAETITIA: And now I'm 65 kilos.
TIM: So, you've lost over 100 kilos?
LAETITIA: 100 kilos, yep, I've lost 100 kilos.
TIM: Residents are weighed weekly to monitor their progress. 37-year-old Laetitia is one
of their biggest losers. 10 stone 4.
NURSE: Well done, Laetitia, you've lost a pound. How do you feel?
LAETITIA: Wonderful. I'm able to see myself in the mirror and I feel good.
TIM: Does it upset you that your sister is almost held under lock and key?
COLETTE: No. No, because I've lived with her being in an environment that is very loose.
You know, freedom is almost more of a jailer.
LAETITIA: What is it for breakfast?
NURSE: Alpen porridge this morning. Alright, I'll see you when you come down.
COLETTE: Laetitia had no life, Laetitia has a life, that's how I see it.
TIM: Colette Brown is Laetitia's older sister.
LAETITIA: Hi, sis! Alright, I'm fine, how are you?
TIM: Laetitia sees her family once a month.
LAETITIA: I'm really looking forward to seeing my sister. I haven't seen her for a long while.
Go shopping and maybe the cinema. Do you think she'll be impressed with how much weight you've
lost? Yes. She'll probably say, "Wow, look at you, you look fabulous."
TIM: Do you remember the first words that you said to her when you saw her for the first
time?
COLETTE: "Look at you, girlfriend!" I was just, you know... It was just such an exciting
moment to see this achievement.
COLETTE: How much have you lost now?
LAETITIA: I'm 10 stone 4 now.
COLETTE: 10 stone 4? That is fantastic! New dress?
TIM: Every reunion is a chance to show off.
LAETITIA:It's nice going out clothes shopping now, because I can get into clothes she can't.
COLETTE: Laetitia, you're looking beautiful. So proud. Fantastic.
TIM: If you could say something to her...
COLETTE: Oh, God.
TIM: ..what would
you want to say?
COLETTE: Just that I love her.
GAIL: People think they're fat, they're ugly, they're unlovable, but as the weight comes
off and lots of praise and lots of support from the staff, their self-esteem does rise
and they see themselves as a part of a community.
TIM: A room at Gretton is not cheap. Around $3,000 a week, which is covered by the UK
government. In Australia there's hardly any support and the cost could not be higher.
ZOE: Just every day, listening to your son say, "Mum, I want to die, I want to go, I
don't want to live." That was heart-wrenching.
TIM: What did you say to him?
ZOE: Before he passed away, I asked for his forgiveness for bringing him into this world.
I felt it was my fault, I'm sad to say.
TIM: You know it's not your fault.
ZOE: I know it's not my fault, but...I felt like it was.
TIM: It's extremely brave for you to share your story.
ZOE: Yeah, but...People need to know how hard it is and how much these children do need
help and they do need somewhere to go.
TIM: If there was proper care available in Australia, do you think James would still
be alive today?
ZOE: I think so. He's back in his dad's arms, just where he wanted to be, and I'm hoping
he's eating everything in sight. And I know he will be eating everything in sight.