Sabahudin Hadzialic - Info market Geneve 2006 the heart for the kids

ASSOCIATION “ THE HEART FOR THE

KIDS WITH CANCER IN FBIH”

Razlozi za osnivanje Udruzenja su bili u kvalitetnoj koordinaciji i zajedničkom nastupu roditelja i prijatelja djece koja boluju od malignih oboljenja a sa ciljem pomoci u lijecenju, rehabilitaciji i resocijalizaciji bolesne djece. Godina 2002-2003

The reasons for the establishment of the Association were within the quality coordination and joint approach of the parents and friends of the cancer sick children and with the goal to help within treatment, rehabilitation and resocialisation of the sick children. Year of 2002-2003.



Naravno, moramo naglasiti nesebičnu pomoć istoimene Asocijacije iz Luxemburga i gospodje Marie Marthe Bruck Clees i gospodina Francois Schoentgena koji su i odvojili odredjeni iznos sredstava za početak rada našeg Udruženja zbog čega smo im neizmjerno zahvalni.

By all means we have to underline the unselfish help of the Association of the same name from Luxemburg and Mrs. Marie Marthe Bruck- Clees and Mr. Francois Schoentgen who put a side certain amount of financial means for the start up of our Association and for what we are immeasurable grateful.



Prvi i osnovni cilj Udruženja je bio kako riješiti problem oko izmještanja djece van granice BiH na njihovo daljnje liječenje. Drastično je povećan broj djece oboljele od teških oblika leukemije i drugih malignih bolesti, a podatak je da se od 1997 do 2004.g. više od 234 djece do 15 godina starosti liječilo na Klinici u Sarajevu od kojih je 107 oboljelo od leukemije a 127 od ostalih malignih oboljenja. U 2005.g. I 2006.g. se broj oboljelih od drugih malignih oboljenja i povećao u odnosu na raniji period.

First and basic goal of the Association was how to solve the problem in regards taking children abroad/outside of BiH for further treatment. It has been drastically increased number of children with leukemia and other malignomas, and we have the information that as of 1997 until 2004 more that 234 children of up to 15 years of age has been treated at the Clinic in Sarajevo among whom 107 had leukemia and 127 of other kind of malignomas. In 2005 and 2006 the number of other malignomas has increased.



These kids has fight with this terrible disease and they can win only if they are send to the one of European clinics where would be done transplantation of bony pith and by that reason our Association send an open letter to the Federal Minister of Health, Mr. Tomo Lucic. The letter has been published in daily newspapers and within the letter has been underlined the medical status of sick children, despair of the parents who are aware that the can not expect any kind for help of any Institution in FBiH, and the question was also if they can get that help from some European state and in which way- and by doing that Association underlined within the letter the question: Does the State has intention and will to establish and made capable the team for the transplantation of bony pith for the children in the same way as they did by establishing the team for adults.

After the above mentioned letter, Minister Lucic answered the next day in the media and by doing that gave a hope in solving of problems underlining that in finding the solution the Federal Government will involve itself together with the Fond of Solidarity of FBiH. Very soon the decision has been made in regards the conditions and the way of how the ensured persons- kids will be send abroad for healing treatment in regards the cancer. Later on the Contract has been signed with the State where the children will be transferred (and being charged Fond of Solidarity for that)- and it was State of Republic of Croatia. Until today for children has been send for the transplantation of bony pith in Zagreb (Croatia) but, unfortunately three of them has died.

Articles/tekstovi





Zahvaljujući našem Udruženju, djeca koja se ne mogu liječiti u našoj zemlji a neophodna im je hitna intervencija u inostranstvu, se izmještaju u Italiju posredstvom italijanskih humanitarnih organizacija i uz nesebičnu pomoć oko transporta naših prijatelja iz EUFOR-a.

We have also done the following: The children who can not be healed in our country, and there is a necessary urgent intervention abroad, has been transferred also to Italy by using help of Italian humanitarian organisations and EUFOR.



Udruženje ima blizu 100 članova i finansira se isključivo donacijom humanista, ličnim akcijama i nešto iz Budžeta FBiH. Udruženje je na samom početku bilo bez ikakvih sredstava za rad tako da smo pokrenuli različite akcije. S obzirom da je finansijski i socijalni status porodica u nezavidnom položaju, Udruženje pruža finansijsku pomoć porodici oboljelog djeteta, finansijsku pomoć onom djetetu kojem se vrati bolest (relaps) i finansijsku pomoć za odlazak u inostranstvo na daljnje liječenje.

Our Association has near 100 members and being financed exclusively through the donation of human people, personal actions and some of it from the Budget of the Federal Government. Having in mind that the financial and social status of the families of cancer sick children is not good at all, the association gives financial help to the family, financial help to the child with relapse and financial help for going abroad for further treatment.



Naš prioritet je ohrabriti roditelje, pomoći im da prebrode najteže trenutke u životu. Kako bi to i realizirali, Udruženje ima cilj i zadatak da, uz pomoć stručnih lica, educira roditelje kako bi na najlakši način prebrodili tok liječenja djeteta za dobrobit ne samo bolesnog djeteta već i cijele porodice. Zahvaljujemo se svim dobrim ljudima koji nam pomažu u našim naporima da pomognemo djeci i njihovim porodicama kao i Dr. Edi Hasanbegoviću, autoru prvog Priručnika kojeg je izdavač naše Udruženje pod nazivom „Priručnik za roditelje djece oboljele od leukemije“, 2005. a zatim je dosao Bilten i jos jedna Brosura 2006.g.

Our priority is to encourage the parents, help them to overcome the hardest moments in their lives- To be able to realise that, the Association has the goal and the task to, with the help of experts, educate the parents how to find the way to, in most easiest way, overcome the period when their child is sick and all of that not only for the benefit of the sick child but also the whole family. With the help of Dr. Edo Hasanbegovic we have published first Brochure for the parents of the cancer sick children 2005. and after that we have published bulletin and other Brochure.



Konačno smo, poslije skoro tri godine rada i juna mjeseca 2005.g. uselili u iznajmljeni poslovni prostor u naselju Breka u Sarajevu što će nam pomoći u našim daljim aktivnostima. Naše Udruženje je od oktobra 2003.g. član ICCCPO uz aktivno učestvovanje na Kongresima i koordinaciji kontakata sa ostalim članicama. Veoma dobru saradnju imamo sa Udruženjima iz okruženja (Srbija i Crna Gora- NURDOR, Hrvatska- SANUS i Makedonija- LEPTIR) uz nadu da će se ta saradnja i proširiti na osnivanje RAURDOR-a, Regionalne Asocijacije Udruženja na prostoru Jugoistočne Evrope. Takodjer imamo izvrsnu saradnju sa medijima koji nam pomažu u edukaciji kao i animiranju javnosti o problemima sa kojima se susrećemo u našem radu.

ENGLISH



Namely, besides that we are working for almost two years, the Association succeeded just this month (April, 2005) to sign the Contract in regards the renting of business premises. There is a need for the premises to be equipped and we have a hope that we will, with the help of human people, put the premises into the function to be able, after entering the premises (two offices), to have bigger possibilities within the realisation of existing task and achievement of goals. Since the October 2003, our Association is the full member of ICCCPO with active involvement on the Congress of ICCCPO and coordination of contacts with other members. We have a very good cooperation with the Association from Serbia and Montenegro (NURDOR) and Croatia (SANUS) with the hope that this cooperation will expand into the establishment of RAURDOR (Regional Association of the Associations of South- East Europe). We have also and excellent cooperation with the media who helps us in two ways: education and animation of the public in regards the problems we are facing within our work.



Udruženje ima i svoje internet stranice http://srcezadjecufbih.tripod.com i gdje se dnevno mogu naći odgovarajuće informacije o radu Udruženja, o stanju oboljele djece, kao i linkovi od pomoći za roditelje i prijatelje djece koja boluju od malignih oboljenja.

Association has its own Internet site: http://srcezadjecufbih.tripod.com where it can be found (almost on daily basis) information about the work of the Association, status of the cancer sick children as well as links of help for the parents and friends of cancer sick children.

http://srcezadjecufbih.tripod.com/





Naše Udruženje prati u aktivno učestvuje u svim aktivnostima ICCCPo-a. Konferencije, Kroz moje oči, Medjunrodni dan djece koja boluju od raka, Medjunarodna sedmica djece koja boluju od leukemije Turska, rehabiltacija u Barretstown seroius kampu 2005 i 2006.

Our association folows and is in active way involved into the all activities of ICCCPO: Conferences, Through my eyes, ICCD, International leukemia week- Turkey, Rehabilitation at Barretstown serious camp- Ireland in 2005 and 2006



Mnoštvo akcija je realizirano u proteklom periodu a još mnogo toga je pred nama

Many actions has been taken out and a lot of it is front of us



2006Open letter

to the authorized institutions and to Bosnia and Herzegovina public

Request, Demand, AskWe are requesting, demanding and kindly asking that authorized state (government) institutions conduct independent and methodologically shaped up analyze of the presence of cancer within the area of Bosnia and Herzegovina in cooperation with authorized medical and statistical institutions. We are requesting, demanding and kindly asking Ministry of civil affairs of BiH that, within the area of Bosnia and Herzegovina, make possible that children and tinageers who were healed of cancer be release of scoring during the enrolling into the Secondary school and/or University/College.We are requesting, demanding and kindly asking that Institute for Public Health of FBiH and other authorized institutions for transferring of difficult (heavy) cases of cancer sick children that healing treatment outside of Bosnia and Herzegovina be possible with more options and out of the area of South- East Europe, and if it is possible in developed countries of Western Europe.



Takodjer smo i sa naših Skupština upućivali apele i zahtjeve...

We have also send the requests and demands... from the sessions of our Assemblies



KO SPASI JEDAN ŽIVOT KAO DA JE SPASIO CIJELI SVIJET

WHO SAVE ONE LIFE SAFES THE WORLD

Career

Sabahudin Hadzialic - Info market Geneve 2006 the heart for the kids