Solidarity Birthday of a Thalassemic Italian Child
Posted by Eugenio La Mesa in Uncategorized on January 28th, 2010
by Eugenio La Mesa
In the last few days there have been several children’s solidarity birthday’s, but this one is extra special, because it involves a 2 year old child from Modena who has Thalassemia Major, the genetic disease that Cure2Children are curing in Asia, and that is now very rare in Italy .
His mum found us through the Internet and joined our initiative of solidarity Cure2Children birthday’s with conviction and enthusiasm, to celebrate his second birthday. I was very impressed by what she wrote.
“Hello, I am the mother of Christian, this year I’ve decided to give him a solidarity birthday with Cure2Children, in order to help children in developing countries who, like him, are suffering from thalassemia, but who unfortunately are less likely to get the care that he has had here in Italy.
I believe it’s a small gesture, that we can all help children and that is the most important thing there is. My son and I live personally with the problem of thalassemia, and it is vital to receive treatment, so it’s important that everyone does something to help these children in other countries who need care and above all they need to live, as Christian! ”
From me, and from everyone who in any way cooperates with Cure2Children, but especially the children who we save in Kosovo and in Asia, many thanks to Christian and his mother, whose sensitivity and generosity are an example to us all, and they give us the incentive to commit more and more.
I renew my call for families in Italy and abroad to have a solidarity birthday for their children, it’s a small gesture but great by meaning.
With little we can do much.
First anniversary of the “Simone Montomoli” Bone Marrow Transplant Unit @PIMS in Islamabad
Posted by Lawrence Faulkner in Bone Marrow Transplantation, Pakistan, Thalassemia on January 28th, 2010
By Lawrence Faulkner
(photo) As always, Sadaf and Khalid and the whole team did a wonderful job in Islamabad. The ceremony for the commemoration of the first anniversary of the ”Simone Montonoli” Unit for “bone marrow transplantation” took place at the Islamabad Club on 22 January 2010, a beautiful complex frequented by the high society of Pakistan.
In addition to most of the children cured that have come from all over Pakistan with their families, doctors and nurses of the bone marrow transplant unit, there were also about 200 guests including the Minister for Information and Telecommunications Qamar Zaman Kaira, the member of the Standing Committee Rubina Qamikani, the Managing Director of Pakistan Bait-ul-Mal, Zamurrud Khan and the Executive Director of the Pakistan Institute of Medical Sciences Dr. Ghazala Mahmood. Also present were the Italian Ambassador Vincenzo Prati, the Romanian Ambassador Emilian Ion and representatives of the Swiss and Czech Republic Embassies. Sara Rezoagli, the Italian Deputy Head of Mission who arrived form Kabul a few days ago also particpated. The Bangladesh Ambassador, unfortunately couldn’t make it.
The various authorities and the doctors took it in turns on stage, then it was the turn of the children, who delivered a composition to Cure2Children, and in turn they received gifts from the authorities. Zamurrud Khan gave EACH INDIVIDUAL family a check for 30,000 rupees. Many representative from the media were present and the event was broadcast live on major networks. I am very satisfied, the results were excellent and we are very proud to have been able to announce that after just one year, we have been able to achieve important goals, that is to say that the local teams have performed a large number of transplants (23) with results comparable to those obtained Italy but with a tenth of the cost, this gives us real hope that the system can become self sufficient in a short time.
Ambassador Prati has been very supportive and is committed to help in obtaining government funding in the context of a debt conversion agreement between the Pakistani and Italian governments. The Head of Bait-ul-Mal, is committed to sustain a good portion of the expenditure for the next 50 transplants (500,000 rupees per child) and to support us in our future initiatives in Pakistan.
It’s an enormous satisfaction both personal and professional, and it has been an honor to work with all these people eager to demonstrate that in their beautiful country a lot can be abtaind with little. Thanks to all those who have believed in Cure2Children and who have supported us, this is’ just the beginning!
FAQ: how to cure Thalassemia with Bone Marrow Transplantation
Posted by Eugenio La Mesa in Bone Marrow Transplantation, Thalassemia on January 25th, 2010
by Eugenio La Mesa
Thalassemia has been curable through Bone Marrow Transplantation (BMT) for the last 30 years. Cure2Children has been performing BMT in Pakistan since January 2009, and are planning to begin in India and also in Bangladesh together with Noble Prize Prof. Yunus and his Grameen Health Care.
We are constantly asked by people for information about BMT, so we have prepared these FAQ’s compiled by
- Lawrence Faulkner, Cure2Children Scientific Coordinator
- Dr.Pietro Sodani, Consultant Hematologist and BMT expert, member of the Cure2Children Advisory Board
Grameen-Cure2Children a Partnership to win Thalassemia in Bangladesh: A defined action plan and the institutions involved
Posted by Lawrence Faulkner in Bangladesh, Social Business, Thalassemia on January 22nd, 2010
By: Lawrence Faulkner
At the Airport in Dhaka, there is a long queue at the visa checkpoint. The intense early morning fog has delayed many flights that all arrive together mid morning. I’m very tired, even the flight from Mumbai to Calcutta was late and I spent the night in Calcutta airport, an experience that I hope not to repeat.
Grameen has arranged my transport to a hotel near their building. I meet with Sultan and Shamim to take stock of the situation and discuss the agenda.
The next morning a visit to the Shishu Hospital, the Paediatric Government Hospital in Dhaka, where the Director General, Professor Kahn, appears to be very optimistic and committed to supporting the formalization of the agreement with the board of directors of the hospital.
Later in the morning a meeting with the General Manager, Managing Director and Head of Paediatrics, United Hospital to discuss in detail the action plan, we should start with the first bone marrow transplant in July 2010. This seems a realistic goal.
I must return in April along with other colleagues for a transplant seminar that will be attended by potentially interested physicians and nurses. In the preparation of the transplant unit and in the training, doctors and nurses from Islamabad will also be involved as they have acquired a significant experience in a similar context. This is the real goal, to create the conditions and tools such that the transfer of knowledge spreads, a great satisfaction for Cure2Children.
In the afternoon a meeting with the young General Secretary of the Bangladesh Thalassemia Foundation, Dr. Robin Rahim, with whom we discuss the selection process for screening candidates for transplantation and their families. I demonstrate to him the Cure2Children database and he becomes familiar very quickly.
At the end of the day Sultan takes me to Professor Yunus, who asks us a lot of questions about the progress of the project and in particular about how personnel issues will be faced, training and above all clear definition of roles. He seems very interested and determined, I feel that I’m one of his, with such a leadership we cannot fail. An intense day but very productive.
The program for screening and prevention will begin within a few weeks and the transplants within a few months.
The morning after, a tour of Old Dhaka, I’ve never seen traffic so chaotic. Everyone against everyone, crumbling but functional rickshaw’s, carts and Piaggio Api challenge cars and smashed up buses to go through streets only a few meters wide. There are also casual passers-by with incredible loads on their heads that defy the laws of physics. Every so often you manage to see a traffic light whose role doesn’t seem very clear.
You can understand how Bangladesh is the most densely populated country on the earth, 150 million people in an area half the size of Italy. It takes us 4 hours to cross the centre, including a break of 15 minutes at Lalbagh Fort. Some children really enjoyed that I took photos and they gave me flowers, a wonderful gesture equally appreciated.
In the afternoon I leave for Islamabad, incredibly, there is no direct flight between the two capitals, I have to stop over in Abu Dhabi.
Today 3 children’s solidarity birthday parties with 100 children
Posted by Eugenio La Mesa in Birthday Solidarity on January 22nd, 2010
By Eugenio La Mesa
This afternoon at the same time there are 3 children’s solidarity birthday parties, 2 in Rome and 1 in Modena, with a total of 100 invited children, all of which will receive our caps.
I’m really pleased that this initiative is becoming close to the hearts of many families, and I’d like to extend it to other countries (in Pakistan it just started a few days ago and I’ll wrote more in the next days)
A big thank you to all!
First visit to Madurai, India
Posted by Lawrence Faulkner in India, Prevention, Screening, Thalassemia on January 19th, 2010
By Lawrence Faulkner
Naren found us on the internet, he is the project manager of Nivethan Trust, an organization based in Madurai, which deals with child care in several areas, one of which being thalassemia. Madurai is a city of Tamil Nadu, in southern India, in which about 4 million people live in the urban area, where although there are many children with thalassemia, there is no true centre that follows them in an organized way. They are assisted by several doctors none of which have specific interest or expertise.
I arrive at 1pm on the 15th January, we are on the ninth parallel above the Equator, a tropical area with a temperature of 25-30 degrees in January. Naren easily recognizes me at the airport (we have already been introduced on Skype), and takes me to a hotel in the centre where I meet with Mr. Ramalingam and other members of Nivethan. We discuss the 2 day program.
The next day a visit to the government hospital in Madurai and a meeting with some parents, who I am presented to by Professor Murugalatha and Professor Shanmugasundaram of the Pediatric Department. The parents have many questions about the therapy and in particular on the possibility of a cure for thalassemia with bone marrow transplantation.
I visit the blood centre headed by Dr. Velusamy, the pediatric oncology department headed by Dr. Rajaramesharawn, where they treat mainly leukemias (solid tumours are managed by surgeons). At 12pm a meeting with a group of young doctors and later we go to visit another private hospital founded by a Catholic mission. In the afternoon we are expected at Keelamathur village, 8 km from Madurai, where I have the honour to inaugurate a small computer centre with computers donated to the Thiyagam Women’s Trust association, which deals with the training of women with disabilities. The Coordinator, Mrs. Amutha Shanty, herself disabled, is a very communicative, sweet and energetic lady.
At the nearby village of Kodimangalam Pudur another ceremony was prepared for the occasion of Pongal, the festival of abundance and harvest. Here too the Thiyagam Women’s Trust has organized a small after-school class attended by about twenty of the village children, some with disability problems.
Dr. Shanmugasundaram and I planted two symbolic trees, following a small ceremony in the village temple, a wonderful experience, emotional and not easily forgettable.
The next day a visit to the Meenakshi temple, we are accompanied by Mrs Rajalakshmi and Mrs Bose of the local Rotary club. This imposing temple has a very important role in Hindu religion, there are many couples who come here to celebrate their wedding as well as pilgrims from all over India. A really interesting morning and passed in pleasant company.
My visit comes to an end by making a plan on how to proceed with the screening and prevention program and the next steps. They all seem very efficient and motivated, I believe that also here in this reality we will begin something concrete very soon. Madurai has given me some fabulous emotions that I haven’t felt for sometime, I am very fortunate to have the privilege of being able to do this work and meet exceptional people. 3 stops await me (Chennai, Mumbai and Calcutta) before arriving in Dhaka in the morning.
The Screening for Thalassemia in Jaipur, India has Begun!
Posted by Lawrence Faulkner in India, Screening, Thalassemia on January 18th, 2010
by: Lawrence Faulkner
I arrived in New Delhi at 5 am after leaving Florence at 7:30am the morning before, to Rome and Fiumicino airport with a stop-over in Amman. At Deli airport a driver was waiting for me and he took me to Jaipur. It’s about 300 km that we cover in 4 hours.
I slept the most part of the journey, at 9.30 am we cross the Pink City, the historic city centre of Jaipur painted of pink, the colour of welcome, done for the visit of King Edward of England in 1886. At 1pm Rachna picks me up and takes me at the home of Mrs. Parnami where a sumptuous lunch has been prepared for a group of guests. We spent the afternoon working on the database with Dr Priya, Ashok Chanclani (has a child of 4 years with thalassemia) and Himendra Mittal, 31 years old and ‘oldest’ thalassemic of Jaipur.
The afternoon ends with a visit to the laboratory were blood samples are sent for screening. The day has been intense and fruitful, I have no doubt that the program for screening and prevention of thalassemia in Jaipur has begun.
The next day, is a major holiday, the Kyte Jaipur Festival. The sky of the city is filled with kites of all colours, the centre of the event is at the Chaugan Stadium. Ashok is involved in the organizing committee and introduces me to everyone. I even got to ride in a cart pulled by camels. Fantastic! On Ashok’s scooter we go back to Prem Niketam, leaving the stadium I even got an official salute from an elephant. After having discussed with Ganesh, Rachna and Mrs Parnami future programs, they take me to the airport where I’ll get a flight to Mumbai and then the next morning to Madurai.
Eid & New Year celebrations at Simone Montomoli Unit, PIMS, Islamabad
Posted by Saira Faisal in Events, Pakistan, Thalassemia on January 14th, 2010
by Saira Faisal
Treating a patient for an illness is not just about giving them medicines and carrying out complicated surgeries, it’s also about giving them the love and comfort which can heal their mind and soul. Generally they say that a body can heal itself, which is true to quite an extent, but what the body can’t heal properly is the feeling of being alone and not being loved. Cure2Children is not just about saving lives, it cares enough for its patients to make their treatment period a comfortable experience.
They consider social bonding a very essential part of the treatment. Families are not created by blood relations alone, to them, the idea of caring and loving someone to the extent that you can make them happy is what creates a family. And cure2children is all about caring for its family. So, on Nov 28, everyone at C2C Pakistan decided to decorate the Simone Montomoli Unit for Eid and New Year to give a breath of fresh air to Tasbeel 9 and Zulkifal 1 year old, who were admitted there in those days.
We all decorated the unit with lights and balloons and Dr. Sadaf gave the kids another surprise by bringing gifts for them. They were really happy. Everyone was very excited in being able to bring this happiness and to see it on their faces. The doctors and other members of the unit really enjoyed being with the kids and they were truly happy to see Tasbeel playing on her chess board and Little Zulkifal looking very adorable in his new clothes; really loving their gifts!
First Solidarity Name Day for Cure2Children, from a 13 year old!
Posted by Eugenio La Mesa in Birthday Solidarity on December 15th, 2009
by Eugenio La Mesa
A few days ago I was with some friends for lunch, at one point Andrea their son 13 comes up to me and gives me a sealed envelope, he told me that he’d got some money from relatives for his “Name Day”, and he had decided to donate it to Cure2Children, without keeping a penny for himself.
Obviously I was speechless, other than being moved (as indeed were his parents, this being a spontaneous gesture and not forced by the family) I remembered that I had never spoken directly to Andrea regarding solidarity birthdays, but he had listened to discussions made in the family in recent months and so made this decision.
With that money we can pay 2 weeks salary for a qualified nurse in Pakistan.
Andrea has made a small gesture, but the significance is enormous.
For me this is another reason to engage in Cure2Children and particularly in the project of birthday solidarity in which I believe a lot.
Heartfelt thanks Andrea!
Christmas Market in Rome, Solidarity Birthdays and Volunteers
Posted by Eugenio La Mesa in Events on December 15th, 2009
by Eugenio La Mesa
We had a stand at the 4-day “Christmas Market with Heart” at the Flaminio Stadium in Rome. It was Cure2Children’s first participation in a market in Rome, and the experience has been very positive.
Solidarity Birthdays
Distributing flyers , we spoke with a hundred or so families, and we found a lot of interest and curiosity about this new and original method of solidarity.
Volunteers
One thing that impressed me was that we managed to involve 12 volunteers who took it in turns on the stand, without having to make a single call! I sent an email to 4 people, who in turn got in touch with others, the shifts were established and organized by email, without ever talking amongst ourselves.
This is another demonstration that, when you want to help, it’s best to get to work to achieve the result, without making big speeches and involving friends.
I’d sincerely like to thank (even more so because of the cold ………) Simonetta Sorio, Anna Longo, Willi, Assunta Bellezza, Charles Barbaliscia, Monica Macori, Elizabeth Macrina, Laura Mercuri, Simone Lorenzetti, Caterina Costantino, Fabio di Giorgio and Fabrizio Fiore.
And a big thank you to Niccolò Di Raimondo, Deputy Mayor for Social Policies and Personal Services, Health and Youth Policies of the second Municpio, who proposed this initiative and has helped us in the organization.