De zorg voor Senn (9) staat onder druk

Senn (9) has multiple disabilities. He has CHARGE syndrome, and suffers from heart defects, kidney defects, and developmental delays, among other things. He is visually and hearing impaired, and his parents communicate with him using sign language. Furthermore, he receives his nutrition via a feeding tube. Senn requires such intensive care that there is no doubt he belongs under the Long-Term Care Act (WLZ). However, Senn's care is suddenly under pressure due to a change in the law. Senn underwent esophageal surgery last year. Due to complications following that operation, Senn's bowels now need to be flushed every day. This is done at the family's home and performed by the Children's Home Care service. But this summer, Senn's parents received a letter in which the Children's Home Care service explained that they can no longer perform the bowel flushes at home. This is due to a change in legislation. Senn's parents are now afraid that they will soon have to take Senn back and forth to the hospital every day. 'That is impossible.' 'It is already intense for Senn just to get through the day.' Mother Nicole is angry about the situation. She sends emails and makes phone calls to the authorities, but is not being heard. 'This makes it even harder for Senn and the whole family than it already is.'