He is severely disabled and they can only accomplish together a care for Steffen 24/7 so that he is kept happy.
Together they do everything they can for Steffen 24/7. Steffen is repeatedly severely disabled. He can not walk or sit up unaided and is dependent to help in all activities of daily life. He can only communicate in a very limited extent with its environment, but luckily acknowledges his family. Especially when his sister Alina comes for a visit, who is studying in Oldenburg.
That Steffen is now 15 years of age is a miracle; after his birth he had a life expectancy of six months (!). For god’s sake the doctors have been wrong on this one. Meanwhile, it is especially Steffens smile that thrilled his family and shows how brave he masters his fate.
To Steffen, water is, more than for all the other children, vital. Steffen also suffers from hypertermia which means that he can no longer regulate its own body temperature. So he gets, especially in the summer, fever up to 41,7°C, which can be lowered again only by means of cold water. Unfortunately, the bathroom in the family’s house is not usable for him because it is not handicapped accessible and to reach further in, only by a narrow staircase, because it is located in the first floor and only accessible via a narrow stair. So far, his contacts are limited to the cool water, then, in addition to the daily personal hygiene at the sink, with a few exceptions, such as when he visited the childrens’ hospice Regenbogenland in Duesseldorf.
Family S. must accept a credit for the apartment building where they lived for many years in order to be able to call it their own. This gives them the opportunity to convert parts of the house accessible for disabled so Steffens care can completely take place on the ground floor and does not have to be improvised. The biggest improvement: Now there is indeed space for the installation of a handicapped accessible bathroom, but there is no money to fund this.
That’s the theory now reality comes into play: Mum Iris took it quite a bit to overcome before she wrote a long letter to the Toni Kroos Foundation with a request for support. But there the load was removed, because after intensive testing, the team of the Foundation decided to support the bathroom renovation in the S. family house. The conversion has now been completed and the family's life is thus relieved of an essential piece.