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June 6th, 2003 Octapharmas´ long-term commitment to Croatian twins History and Progress Report  Born and raised in Stari Perkovci, a rural district of war-torn Croatia, 11 year olds Ivan and Vedran Klaic are non-identical twins with severe haemophilia A. Their future could have been bleak. Severe haemophilia A in this part of the world during these times had varying outcomes. However, the twins mother had some knowledge of the disease from a long history of haemophilia in their family. This unique understanding of the disease provided ideas for how to obtain some healthcare resources. Their mother’s determination ensured the twins survived during their first three years despite having much less than the ideal treatment plan for haemophilia. When Octapharma and the Bonn Haemophilia Centre became aware of their struggle, a lifetime commitment was made to ensure that the twins would look forward to a normal, active and happy future. Keeping it in the family Haemophilia had affected a long line of the twin’s relatives. Their great grandfather, grandmother, uncle and their mother all carry the defective gene. Suffering from the disease has ranged from mild to severe. In the past, when bleeds occurred, family members were often required to travel to the capital of Croatia, Zagreb, for treatment with fresh whole blood. Concerned family members and inhabitants of the village where the Klaic family lived were ready to contribute as blood donors whenever the need arose.  Ivan and Vedran were born in 1991, the year in which the war broke out in the former Yugoslavia. Because of the family history, the mother recognised the disease at an early stage and took the children to the Haemophilia Center in Zagreb, where the diagnosis of severe haemophilia A was confirmed.However, adequate treatment was not possible as FVIII was unavailable. Vast parts of Croatia were destroyed or heavily damaged, including Slavonski Brod, the nearest town to the small village where the boys lived, adding to the obstacles they faced. A cry for help Recognising the plight of the twins, Dr. Silva Zupancic, head of the Haemophilia Center in Zagreb approached both Prof Djuro Josic of Octapharma and Mrs Elizabeth Kolz of the German Haemophilia Society with the twins story during the 1994 World Federation of Haemophilia meeting in Mexico City. And their cry was heard! From these contacts, and the ensuing discussion with Dr. H.H. Brackmann from the Haemophilia Center in Bonn and the President of Octapharma, Mr. Wolfgang Marguerre, the twins received very special offers for free medical care from the former and a lifetime supply of the much needed, life-saving, FVIII from the latter.  The twins were started on a prophylactic FVIII regime and their mother received instruction from the Bonn centre in the management of home therapy. The transportation and delivery of the drugs FVIII was successful even in the worst phases of the war, when the home village and the whole region were heavily shelled. Immediate medical care was provided by the local haemophilia center in Slavonski Brod. In 1995, Mr. Marguerre visited Slavonski Brod where he met Ivan and Vedran Klaic and their family.Independence During the nine years since treatment began, the boys have been regularly flown to Bonn for check-ups. Initially they were accompanied by their doctor from Slavonski Brod but now the mother and the boys are independent. In 2001, the twins spent two weeks at a summer camp together with haemophiliacs from Germany. During this time they learned how to inject themselves intravenously. Prophylaxis continues to this day under the humanitarian patronage of Octapharma. Octanate 1000 IU is given every second day (180,000 - 200,000 IU FVIII/year for each child). This gift from Octapharma together with the dedication of doctors in both Germany and Croatia has enabled normal development of the twins. Hospitalisation is no longer necessary. Joint damage has been avoided by the regular prophylactic administration of FVIII and regular exercises performed under the guidance of their mother. Looking forward to their 12th birthday in August, these boys are well on their way to making the most from the chances they were given from concerned members of Octapharma and the blood diseases community. © Octapharma AG, 2003 |