106 142 Paraksti
Petīcijas iesniedzējs atsauca petīciju
Lūgumraksts adresēts: Company Agios, USA
Our last battle!
Our only child Maurice, 13, was diagnosed with a brain tumor in October 2016. It's inoperable, as there is no clear boundary to healthy tissue. Untreated, it is lethal. He is considered beyond treatment with what few medications are available. Since he has tumor mutation IDH1, which is treatable with a special medication called IVOSIDENIB by the American company AGIOS, we've inquired with them multiple times. Ivosidenib stops the progression of the tumor and makes it possible to survive several more years.
Costs are covered by German health insurance HKK nationally and through the police by the Volker-Reitz foundation (through your donations) internationally, the Charité hospital in Berlin will take care of the treatment. However, Agios won't release the medication, since it is still in the late phase of a study, and since Maurice isn't 18 years old yet. The worst side effect possible is listed as "diarrhea, in 1 of 20 cases." Dosages and toxicities have been well-documented by Agios.
We are waiving any legal claims, in writing, with physicians and Agios. Agios won't release the medication. Everyone else is recommending it.
Pamatojums
This medication isn't affected by the age of the patient and would have the same effect on a 17-year-old that it has on an 18-year-old. The difference in years between 13 and 18 certainly is less than that between 18 and 95. Side effects can well be considered mild. If he doesn't get this medication, he will die for sure, what else is there to protect him from???
Please help us save the life of our son, we are merely asking for your online signature.
We ask for your support, from the bottom of our hearts. Thank you.
Saite uz petīciju
Informācija par petīciju
Sākās petīcija:
13.06.2017
Petīcija beidzas:
24.07.2017
Reģions:
USA, Massachusetts
Kategorija:
Labklājība
Jaunumi
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Message about a completed petition
09.09.2018 -
Here the final information, which we did not get the drug Ivosidenib from Agios / USA, despite all efforts and disclaimer, etc., a childhood does not seem much value here.
However, our son MAURICE is doing relatively well through sugar renounce and an alternative treatment in London. Germany knows no treatment for Him.
Parents / Mothers and Fathers - Fight for your children as if it were the last day, fight for you. Doctors and companies will not do.
We will never give up.
Maik Wegner, Germany.
www.facebook.de/maikwegner110 -
Änderungen an der Petition
28.08.2017
Debates
Kann es sein, dass Leben oder Tod vom Geld abhängt. Wie krank ist diese Welt? Wer kann das ändern? Wir!!!
Es ist nicht einfach nur so dass es an der Firma liegt, ob sie das wollen oder nicht. Leider ist es so, dass wenn etwas passiert, sie juristisch in die Mangel genommen werden können. Die juristischen Unterlagen dieses Problem zu umgehen sind vielleicht noch nicht vorhanden...wäre evtl. sinnvoll auf dem Weg zu recherchieren.