“We have to keep Bram as fit as possible until there is a treatment that can cure him.”
For the future, we have placed our hopes in gene therapy. It will certainly take a few more years, but the research is advanced and promising. The idea is that we will see long-term results after one treatment.
“I get an infusion every other week. That means I can do almost everything.”
Nynke is 18, she will be graduating from pre-university education this year. Her great passion is ballet, but she also fills her agenda with musicals, school, work and fun appointments. She might take a gap year after her final exams. When you talk to her, it seems as if she is in perfect health. “That is how it feels. But I am just very lucky that there is a medicine for my muscle disease.”