Documentary about family's struggle with rare disease

It is now almost four years to the day that Hanny Poincilit, was told that two of her three children were suffering from a very rare hereditary disease called Niemann Pick C. It manifests itself through a very gradual decline in mental and physical functions and, alas, it remains incurable.
 
It was when the retired secondary school teacher was on her way back from Zurich, where the doctors had informed her of their diagnosis, that she decided she wanted to make other people aware of the fate which had befallen Alix (31) and Mathias (34). She felt that, the more people knew about it, somehow a cure could be found. She pulled over in her car that day and sent an SMS to film-maker and family friend Michael Werder of Hünenberg, to ask him if he would make a film about their children and how they have coped with the disease.
 
Scarcely a week later Werder was at the Poincilit's home in Unterägeri shooting the first scenes. "This terrible fate which befell the family moved me a great deal," said Werder. "I just could not refuse."
 
And so he continued, documenting everyday life for the family, who despite their many ups and downs, always tries to remain positive. Now this documentary is complete and it is to be shown on SRF 1 on Thursday 8 May at 8.05 pm.
 
It was not long after filming started that the family suffered another blow, with the diagnosis that their third child, Zita (26) was also suffering from the disease. It seemed so unfair that three members of one family should be affected in this way, bearing in mind that the number of those suffering from Niemann Pick C in Switzerland is 13, with fewer than 500 affected worldwide.
 
Hanny felt there was no point in asking why this should be the case. After all, there is no answer to that question. She has shed many a tear over it but there are also happy times, with the family enjoying cooking together, reminiscing about earlier days, listening to music or going on holiday to France.
 
"It struck me how none of them complains," said Werder. "and how they summon the courage just to get through every day. It is this positive side which we wanted to get across in the film."
 
Incredibly, all but 52 minutes of the 72 hours of film made since 2010 have been edited out to be enable it to fit into this prime-time viewing documentary slot. It shows how Mathias now lives in a home, unable to speak properly about his time there. Then it shows Alix, in whose case the disease sometimes affects her, yet not at other times. One everyday problem she has is holding a knife and fork properly. Fortunately, in the case of Zita, the disease was diagnosed at an earlier stage and, thanks to medication, she is not as badly affected as her older brother and sister. In fact she is currently training to be a specialist in textile care.
 
Of course the documentary shows father Christoph, too, and what he has done to help combat the disease his children suffer from. Along with three other families affected by Niemann Pick C, the former engineer from the Swiss Federal Institute of Technology has set up the NPSuisse Association, which is helping to finance a number of research projects. He also organises international conferences and lectures, helping to make the public more aware of the disease and hoping that a cure will be found, eventually.
 
Werder thinks that filming the family over the years has deepened his relationship with them. Now, with all the unused material, he hopes to make a longer film, for example one which could be shown at a festival in order to bring the problems of the disease to an even wider audience.
 
The photograph shows Hanny, Zita, Mathias, Christoph and Alex from left to right.