Marisa points out the landmarks on the city skyline and I am
just able to make out the glint of the wings of the Vittorio Emanuele monument. We are only the other side of the river from
the Capitoline Hill, but from the refuge of this roof terrace, the frantic
clamour of the centre of Rome seems many miles away. La
Casa di Peter Pan is sheltered by the leafy slopes of the Janiculum
Hill and lies on the edge of the city’s Botanic Garden, though, as Marisa
explains, their more immediate neighbour is the men’s prison.
She indicates the shuttered windows of the high brick
building opposite.
‘Do you ever visit
your neighbour?’ I joke.
‘Oh yes,’ she replies. ’The governor invited me to speak
there, after the prisoners gave money for the Casa.’
The House of Peter Pan has had a remarkable effect on many
lives over the years, not just in its immediate neighbourhood but across Italy
and beyond. Since it opened its doors in
1994 to children coming to Rome for treatment for cancer, more than 600
families have been accommodated in the House, all gratuito - free of charge.
There are now 33 ‘living units,’ purpose built accessible
apartments, situated in the Casa and two adjoining buildings. Hospitality
extends beyond shelter to the provision of community for families facing the
trial of their lives far from home. The communal kitchens are a good example;
each has six ‘work units’ with cookers grouped in a block of six in the middle
of the room, so that residents face each other when they are preparing food and
thus, by design, are brought together.
Everything is spotlessly clean, the kind of cleanliness
necessary for patients whose immune systems have been compromised by chemo or
radiotherapy. Children return to the Casa between bouts of hospital treatment and
indeed there are facilities for some to be treated on site. There are common
play and activity areas; an art and craft centre with a kiln for firing clay, a
‘chill-out room’ for teenagers which offers
computers, a plasma screen and a place to escape. Italian lessons are provided for those who
don’t speak the language, for patients do not just come from other regions of
Italy but from across Europe and the world.
‘There are many Romanians,’ explains Marisa and she is
obviously proud that they have hosted a little girl from China and a boy from
Iraq.
Nine salaried staff organise
services and co-ordinate the support of a network of 150 volunteers. She shows
me the bedroom for the pipistrelli,
the shift members who stay overnight. There is someone on call, she explains,
24 hours a day, 365 days a year.
‘Even on Christmas Day?’ I ask.
‘On Christmas Day, I am the pipistrello, ‘ she declares.
Marisa and I have known each other for four years. Although
we are of different generations and nationalities, we have a mutual bond; we
both lost children to the same rare illness, Ewing’s Sarcoma. We first met at a
conference
in Sweden on childhood cancer, where she recalls she was shocked when I explained
in a presentation how little improvement there had been in cure rates for
Ewing’s. This was not just since my daughter had died less than ten years before
but since the loss of her son back in the 1980s.
As we sit drinking cola in her office, she explains how her
boy, Emanuele, was the inspiration for the Peter Pan project. He had been
diagnosed with Ewing’s when he was twelve and when the option for experimental
treatment from the United States arose, they took the opportunity. The gamble
appeared to pay off. His cancer went
into remission and, after five years, it was assumed he was in the clear.
With Ewing’s, though, nothing is ever simple and the
following year, the cancer returned. Once again, they turned to the United
States and Emanuele was offered a bone marrow transplant in Minnesota. Again
the family raised the finance, but they would not have been able to accompany
him if they had not been given a place in ‘Ronald McDonald House,’
purpose-built accommodation provided free by the fast food corporation. She remembers Emanuele asking her why there
couldn’t be something like this in Italy.
After his death, the question wouldn’t let her go and she
set herself the task of creating a similar facility in Rome. Working with other parents, she went about
raising the money to buy a suitable property. The obvious starting point was
with MacDonald’s. She sweet-talked a sympathetic local executive into offering
financial support and made a bid for a suitable property. However, with three
days to go to sign the documents, she heard the executive had been moved on and
the funding was being withdrawn. But Marisa, being Marisa, went ahead and
signed anyway, even though she did not have the money to cover it.
‘It might have been you in the prison!’ I laugh.
‘I don’t think so,’ she says. ‘But they could have taken my
house and put me on the street!’
I suggest that perhaps it is all for the best for now they
have their independence. She nods.
‘All these years, I would have had a big ‘M’ hanging over
me,’ she says and makes the sign of the arches above her head and shudders.
She shows me a photograph on the wall of the original building,
a derelict art school daubed with anarchist graffiti. Money was raised for
renovation in one way or another and when the House finally opened, instead of calling
it after a fast food clown, they used the name of the character from the
children’s play, Peter Pan.
She walks me around the premises, showing me the veneer
mosaic of Captain Hook that the workman who laid the block wood flooring
insisted on adding as a finishing touch. On the walls are framed prints of the
original Edwardian illustrations from the J.M. Barrie play and there are, of
course, the inevitable friezes of the characters from the 1950s cartoon.
There is an element of the disneyfication that exists in many projects for children with
cancer but there is no sentimentality here. Marisa emphasises that the Italian word
in the foundation’s title, Onlus, does
not mean charity; it is something more business-like than that. We struggle for
a translation and I suggest ‘not-for-profit enterprise.’ Supported by a
government scheme which allows Italian taxpayers to select which good causes should
benefit, Peter Pan Onlus now has an annual expenditure of around one million Euros.
We continue our tour up the hill to the garden, which the convent allows them to use as a playground.
‘So you get help from both convicts and nuns?’ I ask
‘The nuns charge us
rent,’ she points out. ‘But they do give us bitter oranges from their orchard,
which we make into marmalade and sell.’
We pass two small boys in grey tracksuits running down the
hill. She exchanges smiles with the parents who are walking in tow.
‘They are Romanians,’ she explains.
I ask her about the mechanisms that enable children from
other countries to be treated in Italian hospitals. She gives a vague answer
about EU arrangements but I get the impression she is not very interested in
the politics of it. These are simply
people like ourselves who need help and she is going to make sure they receive
it.
I continue following her up the hill, past an arbour of
roses, while Marisa mutters to me about Brexit.
It is estimated that survival rates for children with cancer
are 10 – 20% lower in Eastern Europe, a disparity which becomes even greater
for forms of the illness that already have poor outcomes[1].
Although minimum standards of care are now set for all health services in
Europe, it is recognised that there is still a need for referral to specialist
centres within EU member states and across borders. It is within this context
that the work of associations like Peter Pan Onlus remains so important.
