There are many ways to handle a situation like ours. We chose to be very open about Mael’s disease. We took our and Mael’s story to the public, trying to make something happen and make people aware of it. Interest in Mael’s story seems to be very high. Here are the articles and television programs about Mael that were published and aired.
On the website of the Swiss Niemann-Pick Association NPSuisse there are many other media reports about the disease Niemann-Pick C as well as the general topic of rare diseases.