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We have been fundraising for children and young adults in Romania since November 1990. The appeal was originally set up by staff at the National School of Government (formerly the Civil Service College) which, until its closure in March 2012, was based at Sunningdale Park in Berkshire.
For most of that time the appeal has provided medicines, medical equipment and financial support for young people who have thalassemia. Thalassemia is a serious inherited blood disease which particularly affects children in Mediterranean countries such as Cyprus, Italy, Greece and Turkey, and to a lesser extent, in Romania and Bulgaria. Soon after birth a child with thalassaemia has little appetite and doesn’t develop properly. Because the child is not able to make its blood correctly it becomes anaemic.
Children with thalassemia need blood transfusions every 4-6 weeks. The red blood cells received in the transfusion contain a lot of iron. This iron accumulates in many organs such as the liver and heart and causes serious complications. Because of these complications, patients who are untreated may only live to around the age of 20. A drug called Desferal has been developed to prevent iron from accumulating in the body. For many years the young Romanians that the appeal is helping did not have access to the oral version of Desferal and therefore had to inject the drug very slowly under the skin, using a small portable pump, for about 10 hours a day. Fortunately most of the young people now have access to the oral version of Desferal.
All of the young people currently supported by the appeal have thalassemia and live with constant health problems. For example they:
Until a few years ago, it was almost impossible for the families of Romanian children with thalassaemia to obtain Desferal so the Sunningdale Park Romania Appeal focused particularly on obtaining the drug for them. Now that Desferal is more available the Appeal spends most of its funds improving more generally their quality of life by providing help with drugs, other medical costs, dietary improvements and travel costs.
Every two months the appeal sends on average £200 to each family. This represents a very significant amount in relation to the income of the families concerned.
Two of the Romania Appeal trustees, Paul Grant and Brian Whalley, regularly visit Romania to discuss health and financial matters with these children and young adults who have thalassemia and with their parents.
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