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Lumos raises awareness on the rights of children with hydrocephalus
15 November 2011
Lumos Bulgaria and the State Agency for Child Protection in Bulgaria will be holding an international conference on 24 November to raise awareness of the needs and rights of children with hydrocephalus and spina bifida.
The event will be attended by representatives of the Ministry of Health, Ministry of Labour and Social Policy, the Agency for Social Assistance, doctors and families of children with hydrocephalus, the International Federation for Spina Bifida and Hydrocephalus, the Regional Representative of the UN High Commissioner for Human Rights, as well as an NGO representing the parents of children with hydrocephalus.
Today there are approximately 120 children in Bulgarian institutions living with untreated hydrocephalus, a condition, which causes the build-up of fluid inside the skull and stops the brain from developing. The condition can be treated with surgery and the placing of a shunt to drain the fluid and release the pressure. These shunts are very expensive and very few families in Bulgaria can afford them. Children who are not treated often end up living in institutions for children with disabilities rather than at home with their families. The issue arose last year, when the State Agency for Child Protection supported by Lumos, was carrying out a comprehensive assessment of the needs of children in institutions for children with disabilities, across Bulgaria.
The conference will feature positive examples of good practice from both Bulgaria and the UK, provided by the International Federation of Hydrocephalus and Spina Bifida, Lumos and the Bulgarian State Agency for Child Protection, as well as the Ministry of Health. It will also give the opportunity for parents of children who have had surgery to share their experiences.
Lumos hopes that the event will create a forum for discussion about improving the care and treatment of children with hydrocephalus and spina bifida in Bulgaria; and preventing institutionalisation of children with these conditions.
