In their 1979 famous song entitled “Another brick in the wall”, Pink Floyd protested against the walls of rigid schooling that were curtailing the freedom and future of kids.
Luckily, it is not always the case that 'bricks are added to walls', sometimes, real holes are made, as happened to the Berlin wall twenty years ago.
In other circumstances, metaphorical holes can be made into walls that rob children of their childhood and freedom, walls that were raised by severe and life-threatening diseases such as cancer.
A 'hole in the wall' is in fact the concept which inspires not only the name, but also the philosophy of "The Association of Hole in the Wall Camps", which was founded in 1988 by Paul Newman (http://www.holeinthewallcamps.org). For more than twenty years, this foundation has succeeded in creating 'bubbles of comfort' in the lives of children who spent a long time within the white walls of hospitals, and who are still struggling along the difficult path which will hopefully bring them (after the conventional 5-year period) to health again.
'A hole in the wall' camps exist all around the world: in the US, in France, in the UK, in Ireland and Israel, and since 2007 in Italy, in a beautiful location in the Pistoia Appennines, near the village of Limestre and San Marcello Pistoiese.
The Italian camp is called “Dynamo Camp” and is still not as well known as it deserves to be (www.dynamocamp.org). It was set up thanks to the philantropy of Vincenzo Manes, head of the Fondazione Dynamo and Vice Chairman of KME, a major European industrial Group involved in copper processing. Fondazione Dynamo supports itself through private donations made by pharma, banks, foundations and private citizens.
Every year, from May until September, Dynamo Camp turns into a fairy-tale world out of space and time and is populated by kings and queens, princes and princesses, knights and chamberlains. Here sick children are given the opportunity to spend one full week completely detached from their 'normal', difficult lives, with no financial burden at all on them or their families.
During this week, the kids can take part in all kinds of outdoor and indoor activities, which range from getting to know the animals of a farm, riding horses, climbing, swimming, and to more creative pastimes such as setting up their own radio programme or theatre piece, playing music, or even journalism. writing.
Through the so-called 'therapeutic recreation', the 'Hole in the Wall Camp' experience is designed to foster self-confidence and independence, while enhancing coping and resilience. The intended outcome is to empower children to reach beyond the limits of their illnesses and to create a lasting and positive behavioural impact on their lives.
The Medical Center at the Dynamo camp is completely equipped and routine procedures are managed directly at the Camp by professional doctors and nurses who work in the field of paediatric oncology. This service is always available and ready for any prompt intervention, but remains hidden and discrete, allowing the children to enjoy a normal summer camp experience in total safety and peace of mind. Head of the medical staff is Momcilo Jankovic, Head of the Day Hospital Operative Unit of Paediatrics and Haematology at the University of Bicocca, Milan.
To date, the 'Hole in the wall' camps have served more than 165,500 children with over 150 different medical conditions. Over 500 children stayed at the Dynamo Camp in Italy in 2009. Many of these kids have haematological cancers, such as leukaemia, for who the prognosis is quite good. However for others who have rare cancers, such as those affecting the nervous system the outlook is not so promising. For these children, and for their families, Dynamo Camp really represents a hole in the wall, a 'bracket of happy memories' for a tough future. In these cases the camp also organises weekends dedicated both to the children and their families.
For infrequent and too often neglected tumours, Dynamo plays also the most important role of raising awareness about the need for more research and funding. Indeed, the percentage of cancers that are defined as 'rare' is actually higher than most people think reaching 23 % (prevalence of less than 50 out of 100.000), and representing 20 % of all cases of malignant neoplasms. In Europe alone approximately 2,7 million are affected by rare cancers (figures from www.rarecare.eu), including all the rare pediatric cancers. Due to their low frequency, they pose particular challenges including late or incorrect diagnosis, lack of access to appropriate therapies and clinical expertise, very limited number of clinical trials due to difficulties in recruiting funds and participants, and last but not least, lack of interest in developing new therapies due to market limitations. The European Action against Rare Cancers has therefore launched a call to action for implementing the political recommendations that emerged from the ‘Conference of Rare Tumours’ held in 2008 (www.rarecancers.eu).
Other initiatives aiming at carving holes in 'cancer walls' through knowledge and research were presented at the ECCO 15-ESMO 34 conference in Berlin (Sept 20-24th, 2009) during the patient advocacy session. Indeed, both the location and the date of the event call for a reflection on the meaning of a 'hole in the wall'. The former for the unique history of the city of Berlin, which celebrates this year the 20th anniversary of the fall of the 'Mauer' (the wall), the latter because on the same day in which the conference started the 36th Berlin city marathon was run.
Many marathons are being run, or walked, literally or metaphorically, to raise awareness and funds in the war against cancer. Richard Bottran has actually ran 365 marathons in one year, after his fianceé died of lung cancer, to raise funds for research and support patient programmes (http://www.marathon365.org/).
Others prefer walking, such as Kathy Oliver, mother of a son with a brain tumour, and brain advocate for childhood brain tumours, who set up an association of people called 'IBTA' (International Brain Tumour Alliance, http://www.theibta.org/), which organises walks around the world as a way to draw media and investors' attention to rare and neglected tumours.
Like the Dynamo Camp, many other associations of patient advocacy are digging small holes in the walls that are still raised by the rest of the world (i.e. friends, workplace, families, doctors) every time a person is diagnosed with a 'tumour'.
Eventually, all these holes will make the wall of 'cancer' fall down, and even if they are not able to cure all the people diagnosed with a tumour, by erasing the 'stigma' that still accompanies their disease, they will make the lives of cancer sufferers more bearable.
I am grateful to Alessandra Ghezzi and Francesca Maggioni for their kind help. Many, many thanks go to all the wonderful people I met at the Dynamo 'Knight Camp', August 21-28th 2009, for the good memories I brought home with me, especially to Susanna, Anita, Jessica, Francesca, Rossella, Tommaso and Vera.
Photos by Andrea Alfieri (Dynamo Camp rights reserved).
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