The foundation was created by the history of Claudio’s illness.
In his last two years of life he was ultimately beaten, but above all fought, not only against his illness and its manifestations, but also against all the difficulties that the bureaucracy and muddiness of our health service (and not just of it alone )s create, making what should not be difficult almost impossible.
Since his disease was discovered, Claudio had been treated in a Sicilian hospital where the care and in many cases, loving dedication of the medical and nursing staff couldn’t in any way make up for the serious logistical and structural deficiencies, the lack of materials, furnishings, tools and equipment needed to make the time spent in it less painful.
Try to imagine what it means to have long queues for a treatment that doesn’t arrive, because of overloads of work at the hospital pharmacy for patients who, in many cases, have endured trips of hundreds of kilometres, that some will have to undertake twice to get back home, debilitated from the drugs which, in fighting the disease, turn them into human larvae!
Dysfunctions of normal administration, from the South to the North – nowhere is excluded!
To the disease, a great vulnerability is added because of the effects of the drugs administered on any bacterium or virus in them or around them: a type of Dante’s circle, in which even those who aren’t ill are a continuous danger, not to mention the fact that in these facilities, extreme closeness between patients and carers is common, as everyone is crammed together to share seats and hours of waiting.
Cancer patients need their bodies to be treated; but the experience made us ask: “What about their psyche, their soul and mind – what bearing do they have on the disease? Can witnessing the suffering of others be of any help? ” In the long hours of waiting in the corridors, sitting on uncomfortable, inadequate chairs that family members and the sick use in turn, we’ve become aware of the types of illnesses other people have, and the states, symptoms and disorders all of them leads to; sometimes, unfortunately, even the death of a few of our travelling companions. Who knows how many times Claudio was asked if the suffering he heard people talking about would be his one day, or if it would be him who wasn’t there anymore one day! Under those conditions, it would have been impossible to get rid of this thought from his mind, if it was there!
The need to meet a doctor, who is ready to give understandable advice or explanations for all of the symptom the disease and the treatment itself causes, is essential for a cancer patient; but our hospital facilities, in a day hospital, don’t provide anything like this: anyone who has a problem outside their treatment times has to contact their own family doctor and hope they have the skills, or as an alternative to A&E, visit a hospital, hoping the duty doctor is prepared for an emergency, or as a last resort, contact God, as long as he deems it appropriate to intervene.
During the two years of Claudio’s illness, on several occasions we have found ourselves reflecting on the opportunities for treatment that have been denied to those who depended on different social and economic conditions: he always had friends and family near him, who were able to interpret various symptoms as soon as they arose and halt devastating consequences; professional friends willing to get involved to provide drugs and care outside of the protocols to deal with the emergencies. How many others, united by the same disease, have all this to count on?
Thanks to health insurance, Claudio was able to evade a waiting list of at least three months and underwent surgery in August 2014 in Milan, which was supposed to eradicate the disease. How many other children, hoping that an intervention could solve their problems, have health insurance that allows them to shorten waiting times, and perhaps, enable them to live?
Meanwhile, they spend another year during which they have been tempted by everything. And then, the hope of an experimental treatment, an extreme yearning for more time!
On that occasion (another reason for being mortified – that an individual has to suffer in addition to their illness), in Bologna, a city that Claudio didn’t know well, in a lull, we were visiting the Basilica of San Petronio. A security officer invited Claudio to remove the cap that covered the baldness his treatment had caused. Obeying the rules, as always, he immediately removed it and revealed his status: I prayed that the guard would feel more ashamed than my son!
And in the event, the experimental treatment never started: Claudio’s condition didn’t permit him to waste time trying something that didn’t have guaranteed results.
Last chance: radio-embolization. This is a therapy that our health service provides for all cases in which the tumour is primary (generated at that site) and isolated (i.e. has not metastasised). The drug used – which is manufactured in two places in the world – only attacks the isolated masses in a targeted way. Claudio has a metastasis to the liver, the diagnostic tests identified them as only being there, and indicated they were isolated, but this was not a primary tumour, and therefore our health care system doesn’t cover the costs. The search for the Centre (there are very few in Italy) that could perform this treatment started, and only Milan showed a willingness to take charge of his case, again thanks to the insurance policy that covered the costs and accelerated the waiting time. November 2015: preliminary tests to identify the tumours to be and the promise that there may have been some results. Our hopes were rekindled but we had to wait for the drug to be manufactured in Canada. In mid-December the doctors, while finding a clinical picture of progressive disease, the treatment was carried out.
He returned to Sicily and while walking on his staggering legs, had to climb the steps of a national airline company: he needed to be supported, but neither I nor his father was able to, because of all the baggage. A lady (thank you!) took one of my bags from my hands and said “I’m a mother too” and enabled me to support Claudio. No airline provides support on the plane unless it’s with an assistant: my son did not need assistance to be transported in a wheelchair, taken onto the aircraft in an elevator cage) but merely to be helped not to feel different and to preserve his dignity.
Bureaucracy, insufficient staff, waiting lists, journeys of hope, and an endless search for hospitals or doctors who could help Claudio in his fight against the disease! Objective difficulties that add to a fight against time that isn’t there.
The foundation was founded from all of this: from the desire to do something concrete for those who still have a hope of staying alive, to make easier for them what has been difficult for us.
Hence the desire to provide scholarships, so our medical staff can acquire the skills needed to understand and use new treatments, to make treatments accessible that the National Health Service doesn’t provide, to encourage research into the prevention of rare and germinal tumours so the disease and its inauspicious outcomes become less frequent, and eventually to involve professionals prevention work.
Conscious, as the disease has taught us in recent years, that little can be achieved alone, and that the contribution of many is essential in this battle, which affects everyone, the foundation intends to collaborate with the other foundations and associations that share the same objectives, and to join forces against this enemy with its various faces: illness, incompetence, bureaucracy, delays, insufficient funds and sparse attention to the sick.
You can do a great deal with your heart and soul, but often it simply isn’t enough! We are asking you to be close to us by helping those who still have a life expectancy to fight the many faces of this illness.
Claudio’s Mother