We met Emanuele Scifo who dedicated his life to children with rare diseases through his Foundation, which bears his name, and we interviewed him for Rome Central Magazine.
1) Hello Emanuele tell us your story from the beginning.
My life since the age of 5 years was not very easy, unfortunately my health always gave me big problems but I always managed to get up even when everything could now seem lost.
Today, unfortunately, I think I arrived at the end of my trip, not me I had so much lamentation from life, a magnificent family, a sister who gives me light in my dark days and many true friends. Unfortunately since 2005 began a calvary, hope and with a pathology that has consumed me over time.
I was weighing about 98 kg, I was overweight but having used drugs for one previous renal pathology my weight was almost normal.
My life despite the problems normally passed when one day, just after lunch I began to have a strong sense of nausea and vomiting accompanied by tremendous pains in the abdomen.
From then to today that weight 44 kg has passed some time, maybe the most I have spent in the operating room and in the hospital wards of the S. Orsola Hospital
of Bologna. All my symptoms directed the diagnosti towards a pathology called pseudo-chronic intestinal obstruction exacerbated by a gastroparesis that, in fact, despite the surgical interventions has not regressed but has worsened.
This deterioration had induced the clinicians to insert me into a list for one multivisceral estomach transplant – (duodenum-pancreas-spleen-small intestine crass), which seen my health would have represented the last chance.
Of course, how easy it is to understand this type of transplantation is a lot rare will be a 40 in the world and unfortunately has a high rate of
mortality.
This did not bother me, nor did it scare me, just that since the only center in it Italy that carried out this transplant was Bologna and as said the intervention was
a high-risk intervention and the timing was uncertain.
The only possible alternative for me would be to go to Miami, where although the chances of life or death would be the same at the center of the Jackson Memorial Hospital, certainly the incidence of the intervention to which I my would have had to submit was higher and therefore this could have played in my favor.
As you can imagine the estimate of an intervention of this kind was very high, there was talk of a million and a half dollars.
I wanted to play my last chance, and since March 2014 a marvelous solidarity race has started that has seen mobilizations, squares, families, children … ..Of course a figure of this entity could only be reached with public funding, but the ‘attention of the media and the commitment of the Health Commission of the Campania Region and of the then Medical Director of Mia ASL, with authorization from the Ministry of Health have provided, directly in Miami a loan of 1.5 million dollars.
I left for Miami, strong of my hopes but after 20 days of tests, it was discovered that mine was a rare disease of slow progression type of cancer and that surgery of any kind would have been completely useless. Today I live my condition, between experimental chemo and conventional palliative drugs, to endure this evil that slowly will bring me to an end.
2) Emanuele, Help our readers understand what is a rare disease.
A disease is considered “rare” when it affects 5 people per 10,000 inhabitants. However, the low prevalence in the population does not mean that people with rare illness are few. There is talk of a phenomenon that affects millions of people in Italy and even tens of millions across Europe. Moreover, the number of known and diagnosed rare diseases varies between 6,000 and 7,000, but is a reductive estimate. The European Union calculates 8,000 (Draft National Plan for Rare Diseases 2013/2016). Speaking of rare diseases in their entirety, and not as individual pathologies, serves to highlight and recognize a series of common welfare issues and to design targeted and non-fragmented public health interventions, which involve population groups sharing similar needs while safeguarding peculiarities and differences. In this specific optic, the work of the Emanuele Scifo Foundation is inserted, not focusing on the single pathologies, where, although never too many, there are already numerous and important entities that dedicate themselves to this specification, but identifying a specific population group (Children), The Foundation commits itself with all its planning to the specific analysis of their common needs, one of all the scholastic integration.
The school, in fact, is a great gym for social and life integration and provides planning for the inclusion of all disabilities, for pupils with specific learning difficulties (DSA) and in any case for all pupils who need interventions. Special Education (BES). School integration is a cross-linked and widespread process that activates and puts in synergy the resources of many significant actors: the pupil in question, the teachers, the support teacher, the school staff, the service operators, the classmates, the family, the whole community, and the teaching strategies designed and used by it link the needy pupil to the CLASS, thus making his presence meaningful and at the same time are a link between the curriculum and support teachers, they involve all the students, trigger informal teaching resources in the class group and enhance the differences. With these assumptions, the Foundation commits itself to using its resources to carry out all the interventions aimed at favoring the educational, training and social development of all the actors involved in the aforementioned process. Through prestigious collaborations with Italian Universities, Modena and Reggio Emilia among all and the acquisition of protocols from brands of national importance SOS DISLESSIA prof. Giacomo Stella, offers a path of adjustment and improvement of the integration of all children with special Educational Needs that even if related to the peculiarity of the individual pathology, do not differ much in the strategy of operation and obtaining results. So the Foundation fits with specific programs of screening, support paths for families, moments of orientation for the teaching staff and not, with the sole purpose that, however rare a single pathology may be, is common to all children and that is the desire to learn and we have a duty to help them.
3) What are the real difficulties in Italy in carrying out a foundation like yours?
The management difficulties encountered in carrying out a Foundation in our country, according to my opinion, are above all related mainly to the lack of information that is given to those who decide to make a donation, Business or private citizen. Here is the new amendment of the law that comes into force from the first of January 2018n, according to which As also published on the Sole 24 h “Article 83 of Legislative Decree 117/2017 extends the tax benefits for cash and in-kind donations made by 1 January 2018. In particular, the Irpef deduction for natural persons’ donations (from 35% if the beneficiary body is a voluntary organization) increases from 26% to 30%. The ceiling of 70 thousand euros will then be eliminated as the maximum amount of the donation established by “Più dai, meno versi”, applicable in the current version until 31 December 2017. In practice, donations in cash or in kind carried out by physical persons, entities and companies, will become deductible within the limit of 10% of the total income declared. “But how many are really informed of this situation in Italy? Very few since the latest surveys, if not in campaigns strongly pushed in the media, donations, or at least those traceable are still significantly lower than in other countries (USA). This could be an important appeal to our politicians, perhaps increasing the information campaign in this matter.
4) Your future projects ?
My future plans?
Well, my Foundation with its motto I think it’s pretty clear on the subject, “Start doing what you can and you’ll be surprised to do the impossible”. The impossible ??? Well for the spirit of my Foundation the impossible is traceable in many things, giving as an example even a child in a bed counts his days, the joy of reading “how can” to write as he can “to learn” as he can “… This is impossible.
5) How can porsone help you support your Foundation?
Anyone who wants to help us can do it in various ways through donations to the Foundation’s bank account or through 5×1000, all the info and methods can be found by going to the official website: http://www.fondazionescifo.com
Maximo De Marco began his career at an early age as a dancer, model, actor, singer, training and artistically perfecting internationally, winning a grant issued by the EEC (European Economic Community) that will lead him to study with teachers of World fame, later becoming author, director, choreographer, discographer, designer and writer, thanks to all these working experiences in the Entertainment World, today Maximo De Marco is one of the most important and internationally recognized Art Director , Nominated Art Director to Vitam by the Vatican, for the WYD and Friends of Pope Francis (World Youth Day), Official Member of the International Dance Council of UNESCO and Premio Cavallo D’Argento Rai (Italian Radio Television), Career of the Music Life Tv Awards (SKY) and of Cantagiro as best Artistic Director, Amen Prize for Literature with special mention at the International Exhibition the book of Turin in 2013 and winner of the Salerno International Film Festival in 2017 with his religious historical film “Petali di Rosa”. In his career as Art Director, he has directed Televisions, Radio, Magazine, Theaters, and great Star of Music and Performing Arts, including the English Pop Star Boy George, for his World Tour in the 90s “, the winner of The Voice of Italy Sister Cristina, and other artists such as: Franco Simone, Teo Mammuccari, Fabrizio Frizzi, Antonella Ponziani, Claudia Koll…