2 million syringe
A year later: This is how Ben feels after the expensive treatment
The world’s most expensive drug made a huge difference to Ben.
Ben from Heinsberg moved the world: The one-year-old was barely able to move due to a genetic defect. For his treatment, he was given the most expensive drug in the world: a syringe that cost around two million euros.
Little Ben is a cheerful and bright child. At just a few months old, he learns his first words and laughs a lot. But Ben’s motor skills deteriorate worryingly every day. A doctor confirms the bitter diagnosis: the little boy is sick, he has spinal muscular atrophy. Ben’s only hope is Zolgensma, the world’s most expensive drug. His parents would have to raise almost two million euros for this gene therapy. The Herrmann family cannot do this financially – but there is still reason for hope.
Germany is committed to saving injections
During the corona pandemic, the family receives incredible support from friends, neighbors – and even from celebrities from all over Germany. After just a few weeks, they can collect more than 1.2 million euros with the “Fight with Ben” fundraising campaign – until the health insurance company announces that it will bear the costs of the therapy.
So is Ben today
A year has now passed since Ben’s treatment. An RTL team wanted to find out how the little boy is doing today. The good news: the drug has worked and is soon showing its first successes. Ben will be able to move his feet in summer 2020 and, for the first time in his life, his legs. But is that reason enough to hope that he will soon actually be able to walk? In the video you can see how the family is doing today.