Sonja Mensch

10 Chapter 1 These photos give an impression of Jeroen’s possibility to raise his head while sitting in his wheelchair. Jeroen did need the support of his armrest to be able to push himself up and raise his head. In this position he could for example take a bite of his food. Look at the smile on his face after completing this manoeuvre. Jeroen had a big birthday party on his 18 th birthday. Unfortunately he died a few days later after complications from his umpteenth pneumonia. Severe multiple disabilities There is no uniform description for this group of children in the current literature. Apart from severe multiple disabilities, the terms ‘severe neurological impairment and intellectual disability’, ‘profound and intellectual multiple disability’, ‘severe motor and intellectual disability’ and ‘severe (generalized) cerebral palsy’ are used (Nakken & den Ouden., 1985) (Mergler et al., 2012) (Proesmans et al., 2015) (Munde & Vlaskamp., 2015) (Liptak et al. 2001) (Calis et al., 2010). I will use the short description ‘severe multiple disabilities’ and will use the abbreviation SMD in this thesis. Whereas aetiology of the disorders is variable, severe multiple disabilities are always the result of severe brain damage. A broad range of damaging factors that can be genetic, toxic or traumatic, acting before, during or after pregnancy and birth, can cause these disabilities. Brain damage that occurs before birth, during birth or within a year after birth is called cerebral palsy (Bax et al., 2005). Brain damage, caused by genetic