Wir haben von einer Freundin aus Havanna einen Hilferuf erhalten. Das Kind einer Freundin von Ihr leidet an einer grausamen Krankheit, geholfen werden könnte dem Kind evtl. hier in Deutschland. Es gibt hier eine Spezialistin für diese Krankheit, die hat aber vermutlich aus pekuniären Gründen mehr oder weniger heftig abgewunken.
Einen Flug für Mutter und Kind könnte ich bezahlen, eine Behandlung nicht.
Hat hier jemand Ideen, wen bzw. welche Organisationen man "anbetteln" kann?
Weiß jemand, wie die Visumspraxis für "Gesundheitstouristen" hier aussieht?

Um die Situation zu verdeutlichen, gebe ich hier mal den Hilferuf der betroffenen Eltern an die deutsche Spezialistin wieder:

In Antwort auf:

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Dear Dr. AAA:
This letter is written by the parents of a baby affected by the Werdning-Hoffman disease. We are Cuban, we live in Havana and our names are BBB (father) and CCC(mother). We are writing to you with the hope of finding support and maybe solution to our terrible problem.
Our son was born on December 20th, 2003, apparently without any problem. His ailment didn't show during the first month of life and it passed inadvertently for the doctors that carried out the childbirth, including to the childbirth neonatologist, and even for his mother who is also a doctor and specialist in integral general medicine. Lapsed the first four weeks we began to notice that the boy had lost some of his movements and we noticed a suspicious flaccidity in his legs, arms and neck. Quickly he worsened, almost until the immobility and an enormous flaccidity in all his body. We looked for specialized help in the hospitals until the ailment was diagnosed as Werning-Hoffman by the maximum authorities of the matter in Cuba. The genetic studies that were carried out by blood tests confirmed it. However, we are informed that the illness still doesn't have neither treatment nor any cures and we are challenged to expect our son's death in any moment for any breathing failure or infectious complication of the lungs.
We are writing to you because we cannot resign and we want you to extend us a hand so that you give us some light and hope. We cannot believe that there is not anything to do against this illness, we cannot believe that we should see how his live is slowly ebbing away and not to be able to help him in his terrible suffering. We need to know the last thing that is being done to solve or to alleviate this ailment in the richest countries.
We knew by the internet that you presented a work in the 7th annual meeting of FSMA Research Group where you confirmed the valproic acid (VPA) as an important drug that restores the pattern of "splicing" of the exon 7 of SMN2 and it activates the transcription of SMN2. We want to know if this drug has been proved in patient with SMA or if the Institute of Human Genetics in the University of M, Germany, to which you belong, has some reseaerch project to test this drug in new patients. If this will be carried out, we are willing to collaborate participating with our baby in these tests. We are interested in participating but we don't know if we can, because we not only don't have resources to pay the travel costs but instead we are fearful that this is impossible because of the special situation in the relationships between Cuba and Germany. For that reason we ask you to help us in this sense and tell us the truth about the real possibilities that we have for participating or what we would have to do to achieve it.
Please, answer us something, we don't want to be alone on this. If there is something that you consider important and that we should know, communicate with us. If there is something that you can do, help us, do something for our baby, we would be thanked for a lifetime and we will be your eternal debtors.

Respectfully:

AAA y BBB

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bitte macht hieraus keinen Laberthread, es geht um ein ganz konkretes Problem.
Ich bin über jeden Hinweis und jede Inspiration dankbar.
Jeff

¡Danilismo o muerte!