00.00

Interview with Anabela

Anabela- She knew she was dying so we had to confront the situation. She wanted to die, she felt awful and was in pain. She said her only inheritance was her daughter.  She had nothing else to leave me except her little girl.

00.19

Photographs

When Anabela's sister Candida died, she left her daughter seven month old Vanessa, with the same disease that killed her.   Aids.

According to United Nations figures, world wide there are more than 10 million children with HIV and aids.  And every year 3 million more become infected, that's about six every minute.

00.48

Baby sleeping

TITLE

CHILDREN WITH AIDS

01.00

CU Vanessa

Vanessa is one of the lucky ones. With an addict for a father she's being looked after by her aunt and uncle although they had doubts about taking on such a huge responsibility.

01.19

interview with José 

José: When her mother became pregnant we knew what was going happen and I'd always said I wasn't sure if I wanted to take her. It wasn't because of what she had, it was if I wanted to have a child who wasn't really mine. The illness didn't matter.

01.40

Interview with Anabela

I understood if he couldn't accept her because she's only his niece and goddaughter. But I told him that if he didn't want her we'd have to split up because I would take care of her.

01.53

José

Jose - I had my doubts, because it seemed futile to raise a child that was going to die, yet  what we get back every day is gratifying.

02.17

José bathing the baby

02.37

José drying the baby

But looking after her isn't easy and the first few days of parenting were tough.  Because of Vanessa's condition she needs a lot of special care.

02.52

Interview with José

José: At first it was really difficult to get used to her noises...to her breathing....to her cough and when she was crying for milk or her dummy. I'd get confused and go to the kitchen for milk and come back empty handed. I'd pace around and forget where I was.

03.13

Images of the baby´s hand

Up until now Vanessa's childhood had been a story of neglect.  Her mother was often drunk and would forget to give her milk and medicine.  At seven months old Vanessa weighed little more than three kilograms.

03.32

Images of pigeons

By then it was evident that the HIV virus had already started to destroy her immune system and she was suffering from full-blown AIDS. With no bodily defences a simple cold could become fatal. Eventually she did become seriously ill and Anabela and Jose took her to hospital.

03.56

Interview with Anabela

Anabela:  I went to see her every day I wasn't working. On one occasion she caught an infection in her gut and I didn't think she was going to pull through. Her eyes were black and she was constantly throwing up. She didn't want any affection and turned away from me every time I approached her.

04.17

Interview with José:

José: By then she was very close to Anabela. One day we arrived at the hospital and her little hand was black and we thought : she'll never leave this place.

04.28

Images of the baby

But Vanessa fought back and gradually her health began to improve. Soon she able to go home.

04.41

bottles

Anabela: these are vitamins, because she is a little weak.

04.45

Image of food blender

and Anabela preparing Vanessa´s lunch.

Now she survives on a special diet which Anabella prepares every day. Caring for Vanessa has taken over her life and Anabela combines a part time job with her routine of looking after the sick child.

05.07

Drawer with medicines

There's also the cocktail of medicines which Vanessa has to take like clock work. A recent report by the United Nations estimates that more than 90% of infants born to HIV-positive mothers acquired the virus during birth or through breast-feeding.

05.35

Anabela opening the bottle

And while these medicines cost Anabela and Jose more than £200 a week they can only hope to delay the onset of aids rather than eradicate it.  Although such a reality can be difficult to accept, often the hardest part for parents is coping with public awareness and understanding of AIDS.

06.04

Interview with José:

José: People often say that we must also have AIDS because we live with Vanessa. Although there are people who like to see her, they will only touch her clothes... maybe because they're afraid. Other parents rush to pull their children away if they go near her. Even with us! if people know what Vanessa has they give us strange looks. Personally I don't care.  Sometimes I deliberately tell them I'm her father just to see their face.  They look at us as if we're animals.

06.39

Images of a cot

Globally the plight of children with HIV and Aids is severe.  Many living in the third world live a pitiful life without treatment or care.  Although Vanessa might not live beyond her childhood years at least she's being cared for.

07.05

Images of children getting dressed

Early morning and breakfast time. Children are getting ready for school and babies are being fed.  Typical family scenes but this family hides a dark secret.  Amidst the normality there lurks a tragedy so emotive that they've chosen to remain anonymous for fear of condemnation from friends and neighbours.

07.33

Interview with Caetano:

Caetano: I found out I was HIV positive the day my youngest daughter was born.  I had a feeling I was - I just knew somehow - I belonged to a high risk group, it was more likely I was than not.

07.50

Man smoking

Caetano and  Manuela met when they were teenagers. Caetano introduced her to drugs and for nine years they lived as addicts, their lives consumed by scoring enough heroin to keep themselves going.

08.07

Interview with Mena:

Manuela: I was totally hooked on heroin when I got pregnant... I just couldn't believe it.  I kept saying "It can't be true,", I didn't even know I had the virus, or was infected.  I spoke to a nurse at the hospital.  I explained that we already had two children and we were addicts and couldn't have another child. She said the State didn't accept responsibility for that kind of situation. The baby would have to be born even if he was like a monkey, or something. That left us shattered and the pregnancy continued.

08.55

Image of a children´s book

An AIDS test confirmed that both her and the unborn child were HIV Positive. For two years after the birth they ignored the spectre of AIDS but then Sara suddenly became ill.

09.09

Interview with Caetano

Caetano: Up until two she had no problems but  then, infections started to appear. First it was  tonsillitis then it was a virus, or a fungus. The doctors weren't really sure. Their normal treatments weren't working and she deteriorated.  Then she started to lose her voice and the doctor confirmed she had thrush in her mouth. At that moment we had to come clean about her condition because we knew she was dying.

09.52

Images of child

Sara was transferred to the specialist Hospital in Lisbon where the doctors had some shattering news for the couple.

09.02

Interview with Caetano

Caetano: In Lisbon things got serious, the first doctor I spoke to said that the situation wasn't good, children that fall ill at a young age have a shorter life expectancy...the earlier they get ill, the earlier the problems start. He told us that she was ill from a very young age and her life expectancy was only four years.

10.30

Image of a cigarette

Now they were forced to take some tough decisions.  They'd kept Sara's illness a secret from everyone including their other children to protect them from prejudice.

10.45

Interview with Caetano

Caetano: We had to tell the children. It would  be impossible to hide it from a close friend who visited all the time, let alone from them. Anyway it's not possible to disguise a treatment using 18 different medicines at home.

11.03

Images of baby by the medicine cabinet

Sara's health rapidly deteriorated and she needed constant medical attention.  She was losing weight and overnight the thrush which had started in her ear had spread to her larynx and her fingertips.

11.25

Image of baby having a dressing on her hand

With such a bleak outlook for Sara and with addicts for parents it was Sara's nine year old sister Mafalda who took on the responsibility of helping to look after her sister.

11.40

Interview with Mafalda:

Mafalda: First I fix the vitamins, then I mix water a with it and then the pills.

11.55

Mafalda mixing the medicines

Mafalda can now remember all the pharmaceutical concoctions she gives Sara, off by heart. A fact even more remarkable when she recognises the potential tragedy that surrounds the family.

12.10

Interview with Manuela:

Today is father's day and she made him a doll's house. She said to me:  Mum put my photo in there and later on when dad dies take it out and put his in.  I asked her: why, is dad going to die? She said: Isn't he?

12.28

Images of Caetano and a stereo system.

With three members of the family on a death sentence  and having full blown aids himself Caetano now sees his life as a short term proposition.

12.46

Music and Caetano cuddling the baby and smoking a cigarette

Caetano: I have three children to bring up but I have a fear that no medicine can magically cure, it's the fear of not being able to raise my children. It's not that I won't get to see them as adults, getting married... the process of raising a child...it's that I want to leave them ready to look after themselves, without needing anyone's help, so that they don't have to go to an institution.

13.22

Voices of children, images of a baby wearing a green tracksuit

But institutions are exactly where children with AIDS do end up.  For generations orphans have found themselves in hospitals like this one which looks after children too ill to continue living in care homes. The children who once came here with leprosy and tuberculosis have been replaced by the victims of AIDS.

13.47

Images of empty corridor. Children voice´s

By 1997, 8.2 million children had lost their mother or father to AIDS before their 15th birthday.

13.50

Image of baby lying down in the cot

Miguel is one of them.  He's  only been here a short time but is already showing signs of being psychologically scarred.

14.08

child hitting himself against the bars of the cot

Day and night he throws himself  against the bars in frustration. When his father died of an AIDS induced tuberculosis, his mother neglected to care for him and he was eventually taken into care.

14.25

Image of a  woman

Margarita Fornelos is a  psychologist. She used to work for a children's home and has seen many youngsters suffer in the wake of AIDS.

14.44

Interview with Dr Margarida Fornelos

Child psychologist

Dr Margarida F: This is not the normal behaviour of a child who is psychologically well.

It's a sign of  a child who is emotionally needy. A child that abuses himself that way, is obviously a child in great psychological pain.

15.07

Rita reading aloud

At 3 months old Rita was diagnosed as having full blown AIDS and was admitted to hospital. She was only supposed to be staying for a short time until a care place could be found for her, a place which has never materialised. At least here she's found care and support, conditions often missing in families where the parents are drug users. 

15.39

Child washing hands

Rita's never known what it's like to live in a regular family and to play in a normal house. To her a normal life is pure fantasy.  What sort of house would she like to live in?

15.50

Interview with Rita:

Rita: A very, very, very, very big one.

Int: if that was your house, what would you like to have in it?  A bedroom and what else?

Rita: and windows. I would like to have windows, and curtains, and... what do you call that thing...I can't remember what it is called...

Int: what?

Rita: something that has light...

Int: a lamp?

Rita: nods yes.

Int: you would like to  have a lamp? Just for your bedroom?

Rita: nods yes.

Int: don't you have lamps here?

Rita: no.

16.35

Rita reading

For children like Rita, who cannot control their future in the shadow of AIDS, being able to control their environment is vital.

16.44

Interview with Dr Margarida

Child psychologist

The reference to a lamp is because she wants something that belongs to her. It's something she can control herself.  Regarding the curtains... a house has curtains, a hospital usually doesn't. I believe that she's describing what she imagines as being personal, something that could be hers and controlled by her.

17.15

Music. Images of children.

Children with aids have little control over their lives.  Living by a thread from day to day induced depression which in turn leads to a weakened immune system.  HIV develops into AIDS more quickly in children than adults and common diseases like bronchitis and pneumonia are more likely to lead to death.

17.45

Close up of child´s face, soft drums

But perhaps the greatest tragedy is the boredom and isolation felt by many children during their sometimes short lives living in hospitals.

18.00

Interview with Dr Margarida:

Dr: if they were in a children's home they would experience more diversity. As it is they're spending time with children who for one reason or another are all ill. That doesn't help their development or enrich their experiences. They're always faced with a hospital and surrounded by illness.

18.30

Children playing, jolly music.

As the numbers of children with AIDS increases the demand for specialised supervision becomes even more necessary and that includes allowing the children to have fun.

18.44

Image of child in jeans and white top laying.

In an adjacent building to the hospital there's a playground with slides and swings.  It's a paradise for youngsters and is often buzzing with the local children but not with those from the hospital - they're not allowed to join in.

19.10

Sea. Interview with Cristina:

Cristina:

I miss going to the sea, like when I used to come fishing with my mum. It was as if she'd been born by the sea. She loved it so much. She used to come here a lot to pick up "lapas" and "caramujos which she'd sell. When I was born my mum wasn't working and was able to look after me and give me everything I needed.

19.44

Music. Image of the sea.

Cristina's was bought up by her mother after her parents separated. As a small child she used to spend hours lying on these rocks. But then Cristina's mother died of Aids and without a father around her childhood disappeared.

20.07

Music. Cristina sorting out clothes.

The bedroom alarm clock no longer wakes her. When the clock strikes seven, she's already started the day's chores, laying out her siblings clothes and preparing breakfast.

20.25

Image of curtains in a window

By the time Horacio and andrea have woken up their breakfast is ready. Although they have daily contact with a AIDS volunteer it's Cristina who keeps the family together.

20.40

Children talking:

Cristina: I've got a test on Wednesday.

Horacio: rather you than me.

Cristina: why? Don't  you have one this week?

Horacio: I think I have one tomorrow.

Cristina: It's difficult. It's science.

20.52

Andrea reading

Remarkably Cristina manages to keep the house going and still continue her school studies. Unlike many of her class mates she doesn't want to skip lessons and knows what career she wants when she does leave school.

21.09

Interview with Cristina by the sea:

Cristina: I want to be a nurse because I would like to work with the things they work with, medicines and sick people.

21.19

It's experience Cristina gained while caring for her dying mother.

21.25

Interview with Cristina:

Cristina: She got lots of tummy and headaches. Afterwards she started having very strong diarrhoea. She was then admitted to the Calheta Centre and from there to Funchal Hospital.

21.45

Music. Spider

In 1996 Cristina's mother fell ill and was given weeks to live. On the occasions she was able to leave hospital it was Cristina who cared for her.

21.57

Interview with Cristina

Cristina: I helped her to take the pills, to nurse her...to feed her.  The doctor explained I had to wear gloves.  He gave them to me to wear so that I'd be careful.

22.20

Children looking at photographs

Today the children only have photos to remember their mother by.  They are their only link to their troubled background and the family they'll always miss.

22.34

Image of man walking up the stairs

Every day, Luis Martins, an Aids volunteer, visits  Horacio, Andreia and Cristina.  He's the main grown-up in their lives and met them three years ago when he was providing support to AIDS sufferers.

22.55

Interview with Luis:

Luis: Besides the emotional attachment that's created by being together on a daily basis, there's also the promise I made to their mother  before she died... that I would try to make sure the children wouldn't be separated, and to look after them for as long as I could.

23.13

Children sitting I the floor

After their mother's death the first thing Luis did was to find a new home for them. He found this house which although small, is somewhere where they could make a fresh start.

23.31

Cristina hanging clothes

Even so the three years since their mother's death has been difficult for all three children but especially for Cristina.

23.45

Although she can cope with most things in life, being teased at school about her mother's illness is not one of them.

23.55

Image of a clock.

Outside her tight knit family she's open to society's ignorance and prejudice.

24.06

Interview with Cristina

I get scared at school, because it's not nice. One boy calls me names.  He calls me AIDS and makes fun of me in the classroom. So one day I hit him and told him not to call me that any more.

24.25

Image of boy

While Horacio and Andrea are able to continue with their childhood's fantasies Cristina worries about the future. 

24.35

close up of Cristina

Without parents and relatives who can afford to support them, as minors their future lies in the hands of a magistrate.

24.51

Interview with Cristina:

Crist: The lady asked me if we'd like to go to a place with lots of other children. My sister and I to one place and my brother to another. One for girls and one for boys. I said no. I didn't like it.

25.07

Luis putting a dressing on Cristina

It was their mother's dying wish that the children stayed together. Luis Martins has asked the court to be their guardian.

25.16

Interview with Luis:

Luis: The guardianship process for this type of case, the administrative process, is slow. The truth is that the children have been orphans for a year, one year and two months, and there is still no one responsible....legally responsible for them. 

25.44

‘Wonderful World' Music. Cristina playing in the swings

If Cristina could go back in time she would. She misses the freedom of her childhood and her mother who was smiling the last time they were together in the hospital.

25.57

Interview with Cristina:

int: what did she say?

Crist: many things.

Int: like what?

Crist: to be careful.

Crist: so that I wouldn't catch it! To be sensible.

Int: she told you that?

Crist: yes

Int: how did she say that:

Crist: I don´t want to talk about it.

26.39

Slow motion

footage

Caetano soundbite:

It was my fault. All the crap I did, transmitted  to a little baby that isn't guilty of anything.

27.03

ENDS