A Day in the Life of Felix

This film contains factual guidelines on procedure and use of the equipment that people like Felix relies heavily upon. These people require twenty-four hours per day monitoring and twenty hours per day care. Felix’s muscles are extremely weak and great difficulty in breathing unaided. So he requires a ventilator to help his deep breathing (blowing of CO2, taking in oxygen). To be able to connect the ventilator Felix has a tracheostomy tube (special tube in his windpipe to allow ventilator connection), he is also unable to cough by himself and needs a cough machine and suction machine (standard equipment). He is also unable to swallow and speak, has feeding tube in his stomach to be fed with special milk (like astronauts). In this film we have tried to: Explain the indication why the ventilator is needed (why the child cannot breathe on his own sufficiently, i.e. – weak muscles) and what it does. One could expand and give many indications why children need long-term ventilation. Show all equipment involved – ventilator with mains and battery, associated tubing system, maybe demonstrate what ventilator does, suction machine, cough machine, humidifier to moisture air, alarm system. This in itself can cause daily trauma for both the family and the patient. Despite all the suffering incurred by the family, Felix has a good quality of life. He attends a regular school and has many friends that accept him for whom he is and what he is. There are other issues for the siblings, such as attention and restriction’s that have a direct effect on their daily attitudes to Felix and the rest of the family. There are several web sites and books dedicated to this unfortunate disorder. Felix’s mother herself has produced a dedicated website to create a support mechanism for other families and to help and her own book Fragile which deals with her life story. ‘Before Felix and Theo were born, disability was something that didn’t touch my