For families of children with rare diseases, fate begins in a similar way: After birth, their child develops differently than expected, and the doctors are at a loss. Later, it becomes clear that the child has a rare disease. Mona Vetsch visits three families and experiences how the disease shapes their lives. ???? Subscribe to SRF Dok on YouTube now ???? https://www.youtube.com/srfdok?sub_co... ???? Would you like to suggest a topic for us? Then write to us: [email protected] More about the video ---------------------------------------------------------------------------------------- Flurin cried every time he was touched in the first few months, was constantly exhausted, and lost more and more weight. "It's my fault that he doesn't eat," mother Barbara blamed herself. A marathon of examinations began until the diagnosis was finally made: Flurin has Noonan syndrome, a genetic disease that affects Flurin's development in various ways. The diagnosis was both a shock and a relief. Jonas has not been diagnosed to this day. The 13-year-old has four kidneys, an oversized spleen and the rest of his organs are much too small. But nobody knows exactly what the cause is. Nor when and where the symptoms appear. "He's a mixed bag," as his mother Anita puts it. Since Jonas has no clear diagnosis, his illness is not on the list of recognized illnesses. That's why the IV does not cover any costs. The family also has a grueling battle with the health insurance company to get funds approved. "Simon is the most open-minded boy I've ever met," says Mona Vetsch. The two-year-old has a big heart - even though he was only born with half a heart. Simon suffers from hypoplastic left heart syndrome. His rare illness was known before he was born. This presented the parents-to-be with an incredibly difficult decision: do they want a child with the most serious possible heart defect? ​​Rare illnesses are actually not that rare. Around 7,000 such diseases are known and a total of up to 350,000 children in Switzerland are affected. The "Support Association for Children with Rare Diseases" supports and networks affected families so that they are not alone with their fate. 00:00 Intro 01:19 At the day of the support association for children with rare diseases 01:25 Flurin explains his illness to Mona 02:20 Simon's illness 03:35 Jonas' illness 05:15 At Simon's family 14:55 At Flurin's family 19:50 At Flurin's pediatrician 23:59 At Jonas' family 34:13 Mona's conclusion --------------------------------------------------------------------------------------- ▪ A film by Markus Storrer and Samuel Bürgler ▪ Camera: David Merkofer, Martin Schäppi ▪ Editing: Thorsten Thiem ▪ Production: Franziska Wellinger ▪ Director: Nathalie Rufer © 2021 SRF --------------------------------------------------------------------------------------- This is «Mona in the middle»: Unprepared for nothing, but ready for everything: Mona Vetsch is thrown in at the deep end. And she repeatedly reaches her limit. ???? Mona Vetsch on Insta: / mona_vetsch ???? All episodes of «Mona mittendrin»: • Mona mittendrin Documentary series SRF Dok NEW DOCUMENTARY FILMS AND REPORTS EVERY WEEK ---------------------------------------------------------------------------------------- ???? Subscribe to SRF Dok on YouTube now and activate the bell: https://www.youtube.com/srfdok?sub_co... ???? You can find out more about documentaries & reports here: ???? SRF Dok on Facebook: https://fb.com/srfdok ???? More stories to listen to: https://www.srf.ch/audio/themen/mensc... ???? More documentaries on Play SRF: https://www.srf.ch/play/tv/themen/dokus --------------------------------------------------------------------------------------- Channel info: The SRF Dok teams report factually, avoid "scripted reality" and are committed to journalistic integrity. The editorial team's credo: We show life in all its shades. ---------------------------------------------------------------------------------------- Social Media Netiquette from SRF: ► https://www.srf.ch/social-netiquette #SRFDok #Reportage #Children #RareDiseases #MonaMittendrin #SRF