The Valentina Stiftung: A Foundation for Critically Ill Children
The Valentina Stiftung is a new foundation that aims to offer critically and terminally ill children as high a quality of life as possible right up until the end. Our activities are effective and sustainable: together with the mobile children’s palliative care team PalliKJUR from the Universitätsklinik Ulm, we’re building new and important structures in the region in order to provide terminally ill children with home-based intensive and palliative care until the end of their lives.
All children prefer to be at home in a familiar environment with their families. They feel safe and secure together with their parents, siblings and grandparents. But in Germany, 5000 children and young people are so ill that they need the help of a university hospital. Such a diagnosis often implies a long period of suffering – both for children and for their families. During this difficult time, children’s yearning for normality, and for family and home is even greater than it otherwise might be.
That’s why we want terminally ill children to be able to spend as much time as possible at home with their families, receiving out-patient intensive and palliative care from the university hospital. The idea is for terminally ill children to maintain the highest possible quality of life until the end.
In Germany, at-home care of terminally ill children is extremely underfunded. The only chance for the 5,000 incurably ill children, adolescents and young adults in Germany to spend the end of their lives at home and to die there, is if private financial supporters like the Valentina Stiftung fill the immense funding gap in the system.
Not long ago now, our youngest daughter and sister Valentina (13) came to the end of her life. For a year she had battled an aggressive bone tumour with which she had been diagnosed at age twelve. The team at PalliKJUR gave Valentina the option of dying at home. But she felt safer at the children’s oncological unit at the university hospital than at home, since her breathing issues and intense pain had made her dependent on the reliable, professional, and continuously available palliative care provided there. And so Valentina died at the age of 13 in the Universitätsklinik Ulm. We learnt from experience how painful it can be for everybody involved to say goodbye to a child in such a sterile and impersonal place.
That’s why we founded the Valentina Stiftung in July 2016, to improve the situation for other children and their families, and to do so in Valentina’s name. The Valentina Stiftung has developed a successful partnership with the Universitätsklinik Ulm that provides the most seriously ill children in seven Landkreise (districts) around Ulm, including those who are terminally ill, with at-home intensive, professional and palliative care. While the university hospital provides the services and carries them out, the Valentina Stiftung works together with numerous friends, donors, sponsors and funding bodies to make the necessary funds available so that the expert team at the Universitätsklinik Ulm can do its work successfully.
In practice, this means that as a non-profit foundation we approach donors and businesses and ask them to become financial supporters and ambassadors. It’s what Valentina would have wanted.
Who we are
We are a subsidiary of the Bürgerstiftung Kreis Ravensburg, which does all our administration for us pro bono. As a consequence, the whole Valentina Stiftung team is able to work on a 100-percent voluntary basis. This means that 100 percent of every donation ends up where it is needed.
To find out more and get involved: