"UN REGALO PER GIUSEPPE" aiutiamo la ricerca.
Donation protected
Mi chiamo Roberto, giorno 11 settembre 2021 è volato in cielo il mio piccolo “Leone” un grande guerriero, la mia ragione di vita…, affetto da una forma rara di leucemia “LLA di tipo B”, sviluppatasi all’età di nove mesi, l’unico in Europa sia per età sia per tipologia, così da rendere difficile un confronto con i vari protocolli chemioterapici.
Dopo aver lottato per quasi tre anni, subito tre diversi protocolli di chemioterapia, due recidive, due trapianti di midollo osseo da donatore famigliare la “sorellina” di tredici anni compatibile al 100%,” TBI” cioè radioterapia totale in tutto il corpo, all’età di tre anni e sette mesi non c’è l’ha fatta.
In questi tre anni io e la mia famiglia siamo stati in cura al reparto di oncoematologia pediatrica dell’ospedale “Policlinico di Catania”, dove abbiamo incontrato delle persone stupende dai dottori agli infermieri agli inservienti e al personale amministrativo cioè “TUTTI”, abbiamo conosciuto una associazione che opera all’interno di quel reparto, “LEGA IBISCUS ONLUS” creata da genitori che come me hanno avuto la sfortuna di perdere i loro bambini.
Genitori che conosciamo benissimo quali sono le necessità i problemi e le tantissime difficoltà che si devono affrontare giorno dopo giorno…, i cicli di chemio sono lunghi e i bambini hanno bisogno sempre di assistenza, ed è lì che entra in campo “IBISCUS” , ci viene spiegato a noi genitori (dopo che ci viene comunicata la diagnosi e la terapia da fare) che esiste la possibilità di andare in una struttura, sempre all’interno dell’ospedale, in cui si può rimanere e pernottare la famosissima “CASETTA”, solo chi vive certe cose può capire l’importanza che ha questa struttura!!
Passano i primi giorni in casetta ed ho iniziato a capire che non si occupa solo di offrire soggiorno ai bambini ed ai suoi genitori ma ha una missione molto più grande, che cercherò di spiegare nel migliore dei modi.
L’attività della casetta“LEGA IBISCUS ONLUS” (https://www.ibiscusonlus.org/) si divide principalmente in tre parti: ACCOGLIENZA-SOSTEGNO-RICERCA.
ACCOGLIENZA: Assicura l’ospitalità, garantisce omogeneità di trattamento, l’edificio dispone di due piani e copre una superficie di circa 200 mq per piano, a piano terra la reception, una zona giorno, la cucina e la zona svago con tanti giochi pei bambini, al primo piano, raggiungibile anche con ascensore, sono allocate 8 camere con 16 posti munite di ogni comfort, ed un parcheggio riservato all’interno della struttura.
SOSTEGNO: L’obbiettivo principale è sostenere i ragazzi ricoverati nel Centro di Oncoematologia Pediatrica e le loro famiglie, supportare il servizio di psicologia con una psicologa finanziata interamente da “IBISCUS”, garantire presso il Centro la presenza di un medico pediatra che opera a supporto dell’attività clinica, assicurare un servizio di segreteria all’interno del Reparto che consente la facilitazione di tantissime incombenze burocratiche.
RICERCA: Presso il centro è presente un Laboratorio di Citogenetica e Biologia Molecolare, gestito da biologhe interamente supportate dall’Associazione.
Nella sezione di Citogenetica, mediante analisi post natali consente di effettuare su ogni paziente: Diagnosi, Follow-up, Terapia e Prognosi, vengono eseguite analisi su cellule di Midollo osseo e Sangue Periferico,
Dispone di Citofluorimetro a 3-lasers capace di leggere diagnosi di Leucemia Acuta, linfomi e soprattutto sottopopolazioni linfocitarie, utili per comprendere il quadro immunologico del paziente pediatrico.
GLI OBBIETTIVI CHE IBISCUS SI PROPONE DI REALIZZARE SONO: Perfezionare l’aspetto diagnostico nelle Leucemie Acute del Bambino, far parte di un contesto europeo per la caratterizzazione della diagnosi, e lo studio della malattia residua minima nei pazienti affetti da Leucemia Acuta T-lineage e mieloide, il cui risultato ha un impatto prognostico decisivo, implementare lo studio del Sistema Immunitario e delle sue alterazioni nei pazienti affetti da Leucemia Acuta, da patologie reumatologiche invalidanti, neurologiche con patogenesi immunologica, da GVHD (graft-versus-host-disease) ovvero da “malattia del trapianto contro l’ospite”, principale causa dei fallimenti del Trapianto di Midollo Osseo.
Per questi motivi ho pensato di organizzare una raccolta fondi in onore del compleanno di GIUSEPPE, che sarà il 17 febbraio, la somma raccolta verrà interamente destinata all’associazione IBISCUS, per questo vi chiedo di aiutarmi per questa raccolta, basta un piccolissimo gesto per cambiare le cose.
Per altre informazioni o per esigenze particolari potete scrivermi all’indirizzo mail indicando come oggetto: “UN REGALO PER GIUSEPPE AIUTIAMO LA RICERCA”
#unregalopergiuseppesalerno
#agiftforgiuseppesalerno
✅ "VERSIONE IN INGLESE" "ENGLISH VERSION"
My name is Roberto, on September 11, 2021 my little "Lion" flew into the sky a great warrior, my reason for living ..., suffering from a rare form of leukemia "ALL type B", developed at the age of nine months, the only one in Europe both in age and type, so as to make it difficult to compare with the various chemotherapy protocols.
After struggling for almost three years, undergoing three different chemotherapy protocols, two relapses, two bone marrow transplants from a family donor the thirteen-year-old "little sister" 100% compatible, "TBI" that is, total radiation therapy throughout the body, at the age of three years and seven months there is not done.
In these three years my family and I have been in treatment at the pediatric oncohematology department of the "Policlinico di Catania" hospital, where we met wonderful people from doctors to nurses to orderlies and administrative staff that is "TUTTI", we met an association that operates within that department, "LEGA IBISCUS ONLUS" created by parents who, like me, have had the misfortune of losing their children.
Parents who know very well what are the needs, problems and the many difficulties that must be faced day after day ..., the cycles of chemo are long and children always need assistance, and it is there that "HIBISCUS" enters the field, we are explained to us parents (after we are informed of the diagnosis and therapy to be done) that there is the possibility of going to a facility, always inside the hospital, where you can stay and stay overnight the famous "CASETTA",, only those who live certain things can understand the importance that this structure has!!
They spend the first days in the house and I began to understand that it is not only about offering accommodation to children and its parents but has a much greater mission, which I will try to explain in the best way.
The activity of the house "LEGA IBISCUS ONLUS" (https://www.ibiscusonlus.org/) is mainly divided into three parts: RECEPTION-SUPPORT-RESEARCH.
RECEPTION: It ensures hospitality, guarantees homogeneity of treatment, the building has two floors and covers an area of about 200 square meters per floor, on the ground floor the reception, a living area, the kitchen and the leisure area with many games for children, on the first floor, also reachable by lift, 8 rooms are allocated with 16 seats equipped with every comfort, and a reserved parking inside the structure.
SUPPORT: The main objective is to support the children admitted to the Pediatric Oncohematology Center and their families, to support the psychology service with a psychologist financed entirely by "IBISCUS", to guarantee at the Center the presence of a pediatrician who works to support the clinical activity, to ensure a secretarial service within the Department that allows the facilitation of many bureaucratic tasks.
RESEARCH: At the center there is a Laboratory of Cytogenetics and Molecular Biology, managed by biologists entirely supported by the Association.
In the section of Cytogenetics, through postnatal analysis allows to carry out on each patient: Diagnosis, Follow-up, Therapy and Prognosis, analyzes are performed on bone marrow and peripheral blood cells,
It has a 3-laser cytofluorimeter capable of reading diagnoses of Acute Leukemia, lymphomas and especially lymphocyte subpopulations, useful for understanding the immunological picture of the pediatric patient.
THE OBJECTIVES THAT HIBISCUS AIMS TO ACHIEVE ARE: To perfect the diagnostic aspect in Acute Leukemias of the Child, to be part of a European context for the characterization of the diagnosis, and the study of the minimum residual disease in patients suffering from Acute T-lineage and myeloid Leukemia, the result of which has a decisive prognostic impact, to implement the study of the Immune System and its alterations in patients suffering from Acute Leukemia, from disabling rheumatological pathologies, neurological with immunological pathogenesis, from GVHD (graft-versus-host-disease) or from "graft-versus-host disease" , the main cause of bone marrow transplantation failures.
For these reasons I decided to organize a fundraiser in honor of GIUSEPPE's birthday, which will be on February 17th, the sum collected will be entirely allocated to the IBISCUS association, so I ask you to help me for this collection, just a very small gesture to change things.
For more information or for special needs you can write to me at the email address indicating as the subject: "A GIFT FOR GIUSEPPE WE HELP THE SEARCH"
✅ "VERSIONE IN INGLESE" "ENGLISH VERSION"
My name is Roberto, on September 11, 2021 my little "Lion" flew into the sky a great warrior, my reason for living ..., suffering from a rare form of leukemia "ALL type B", developed at the age of nine months, the only one in Europe both in age and type, so as to make it difficult to compare with the various chemotherapy protocols.
After struggling for almost three years, undergoing three different chemotherapy protocols, two relapses, two bone marrow transplants from a family donor the thirteen-year-old "little sister" 100% compatible, "TBI" that is, total radiation therapy throughout the body, at the age of three years and seven months there is not done.
In these three years my family and I have been in treatment at the pediatric oncohematology department of the "Policlinico di Catania" hospital, where we met wonderful people from doctors to nurses to orderlies and administrative staff that is "TUTTI", we met an association that operates within that department, "LEGA IBISCUS ONLUS" created by parents who, like me, have had the misfortune of losing their children.
Parents who know very well what are the needs, problems and the many difficulties that must be faced day after day ..., the cycles of chemo are long and children always need assistance, and it is there that "HIBISCUS" enters the field, we are explained to us parents (after we are informed of the diagnosis and therapy to be done) that there is the possibility of going to a facility, always inside the hospital, where you can stay and stay overnight the famous "CASETTA",, only those who live certain things can understand the importance that this structure has!!
They spend the first days in the house and I began to understand that it is not only about offering accommodation to children and its parents but has a much greater mission, which I will try to explain in the best way.
The activity of the house "LEGA IBISCUS ONLUS" (https://www.ibiscusonlus.org/) is mainly divided into three parts: RECEPTION-SUPPORT-RESEARCH.
RECEPTION: It ensures hospitality, guarantees homogeneity of treatment, the building has two floors and covers an area of about 200 square meters per floor, on the ground floor the reception, a living area, the kitchen and the leisure area with many games for children, on the first floor, also reachable by lift, 8 rooms are allocated with 16 seats equipped with every comfort, and a reserved parking inside the structure.
SUPPORT: The main objective is to support the children admitted to the Pediatric Oncohematology Center and their families, to support the psychology service with a psychologist financed entirely by "IBISCUS", to guarantee at the Center the presence of a pediatrician who works to support the clinical activity, to ensure a secretarial service within the Department that allows the facilitation of many bureaucratic tasks.
RESEARCH: At the center there is a Laboratory of Cytogenetics and Molecular Biology, managed by biologists entirely supported by the Association.
In the section of Cytogenetics, through postnatal analysis allows to carry out on each patient: Diagnosis, Follow-up, Therapy and Prognosis, analyzes are performed on bone marrow and peripheral blood cells,
It has a 3-laser cytofluorimeter capable of reading diagnoses of Acute Leukemia, lymphomas and especially lymphocyte subpopulations, useful for understanding the immunological picture of the pediatric patient.
THE OBJECTIVES THAT HIBISCUS AIMS TO ACHIEVE ARE: To perfect the diagnostic aspect in Acute Leukemias of the Child, to be part of a European context for the characterization of the diagnosis, and the study of the minimum residual disease in patients suffering from Acute T-lineage and myeloid Leukemia, the result of which has a decisive prognostic impact, to implement the study of the Immune System and its alterations in patients suffering from Acute Leukemia, from disabling rheumatological pathologies, neurological with immunological pathogenesis, from GVHD (graft-versus-host-disease) or from "graft-versus-host disease" , the main cause of bone marrow transplantation failures.
For these reasons I decided to organize a fundraiser in honor of GIUSEPPE's birthday, which will be on February 17th, the sum collected will be entirely allocated to the IBISCUS association, so I ask you to help me for this collection, just a very small gesture to change things.
For more information or for special needs you can write to me at the email address indicating as the subject: "A GIFT FOR GIUSEPPE WE HELP THE SEARCH"
Organizer
Roberto Salerno
Organizer
Province of Catania
