A google translation is available –
– The text action, but the parents of the baby’s Movements have started to look after their children, to save those who are suffering from a genetic, life-threatening disease, SMA, which is more than just a shot in the bull’s-eye. Over 300,000 people have already sent messages, in the hope that the figure of 1.9 million euros, will be collected prior to treatment with Zolgensma, it is the most expensive drug in the world. The telecom and Telenet, Proximus, left Tuesday morning to know that she has no expenses will be charged for this charitable action. The Minister of Health, Maggie De Block said in the meantime that the cost is not negotiable.
No one had expected that the text of action to be for the very ill baby’s Movements, Boehnke, to save such an overwhelming success it ought to be. Tuesday morning it was: the counter is already up to 300,000 sms messages en.De nine-month-old Pia was born with SMA (spinal muscular atrophy), that it was only four months ago, it has been reported. This is a genetic condition in which her muscles hardly able to move. Babies with this disease have a thinner and weaker intestines, making them difficult to swallow, chew and breathe. Their life expectancy is up to a maximum of two years.
SEE ALSO.The parents are desperate: the only medication used by two million baby and Pia has to save (+)
The drug is Zolgensma can Links save. Only the injection of this drug in the United States of america to be administered, and the 2.1-million-dollar (or about 1.9 million eur) the most expensive drug in the world. The diagnosis of the Movements came too late to be included in the clinical trial, but a free treatment as a human subject. But at 1.9 million, the family-out of a google translation is available, of course, is not simply to bring to the table, “That is an astronomical amount of money for us.”
1 Belgian out of 10).
now, Mama, Ellen, and dad, Tim, hope that through the benefietacties to raise money to go to the US to pull out. A stream of donations are contributed in the meantime to 100,000 euros. But there is more to it. A lot of more. And there needs to be a national sms campaign for you. “Sending a message costs 2 euros,” says Jeremy. Until Tuesday morning it was a part of the amount you have donated to the incumbent telecom operators. But in the mean time, Proximus and Telenet has determined that all of the money will go entirely to Pia go. “We had no idea that it was to be a humanitarian was. Claims should normally be made before an application can be submitted,” explains Telenetwoordvoerder Isabelle Geeraerts, why not straight away what had happened.
“As a parent, you try everything,” said mom, Ellen, still in a The Morning show on Radio 1. “As long as we know that there is something in her, a promising future may be, whatever the cost may be, and you want them to get. I think it is very important for you to know that we all have to try to make her as good as possible, and to help them. We need to continue to believe that the amount is taken. We are hoping, of course, also have to remember that there are a number of larger donations that will have to come in. However, I do think that in the last few weeks is very unrealistic, one would think, but closer.”
And, if the amount is not yet being achieved. “Pia has a chance to make the first two years, in order for the drug to be given. Let’s say that we mean that the amount is not given, then it is going to be a part of the amount is, anyway, used to have all the tools they need, such as a detergent, and the like. On the other hand: we have a non-profit organization, was founded. Our goal is to have parents in a similar situation, and to help and support you.
prime Minister: “the Government may not enforce it”).
the Minister of public Health, Maggie De Block (Open VLD) said that the Belgian government has little to do with the exorbitant amount of money for the drug. “The product is only available in the U.S. to be recognized. The European medicines Agency (ema), the question of the recognition of the drug has just received. Then farmagigant Novartis announced that the negotiations with each country individually, starting on the return.
The Block is pointing to Novartis’s own. “The pharmaceutical company can be a medicine for the Pia free of charge, through the compassionate use program. However, the government could not enforce it.”
some parents would rather not have to wait for a possible European recognition of a Belgian for a refund. “That’s still a year’s time. And that’s too late for Pia, as the drug must be for her second birthday, to be delivered to work. It’s going to be a one-time injection. In principle, it is sufficient for a week in America, in order to save her life.”
Who is financially contributing, you can to the word Pia and the text to the number 4666. If you want, you can create multiple text message and send it, or just make a deposit in the bank.
www.teampia.be
