Guy Dembour, a life devoted to revolutionizing the approach to disability

Dr Guy Dembour's mission is to highlight the special abilities of children with Down's Syndrome, focusing on their potential rather than their deficiency. A cardiopediatrician and founder in 2001 of Constridel, a multidisciplinary consultation at the Cliniques Universitaires Saint-Luc in Brussels for children and adolescents with Down's Syndrome, he never ceased to promote a positive approach to disability. He passed away on January 22 at the age of 67. 

Guy Dembour was keen to set up a multidisciplinary medical program to monitor the overall development of children with Down's syndrome, who present difficulties in a number of areas (cardiac, auditory, visual, etc.). Monitoring begins with an assessment of the child's development, highlighting positive aspects and building on achievements. We then work with the parents, who are given the means to take concrete action through everyday activities and games they can play with their child. The emphasis is on each child's potential, and also enables parents to detach themselves from the disability. For the first time," he says, "parents hear a positive assessment of their child and are amazed to discover abilities in their toddler that they themselves had not detected. 

He has also lobbied public authorities to recognize the benefits of the multidisciplinary consultations offered by Constridel* and the need to obtain funding to perpetuate and develop this unique care. In an Open Letter  to the Minister of Social Affairs and Public Health in 2017, he and other signatories emphasized the collective benefit of supporting this follow-up by specialists: "We are convinced that such a multidisciplinary proposal ensures short- and medium-term physical and developmental 'better-being', promotes societal integration and, in the long term, enables these children who have become adults to achieve greater autonomy." 

Since 2012, its teams have also been offering a special assessment of children's development through a program dubbed EIS (Evaluation - Intervention – Follow up). This program focuses on the children's abilities and offers them adapted activities to help them gain greater autonomy. Every year, over 400 children and young adults benefit from this specific support. 

Through his professional and family commitments, Guy Dembour has been in harmony with his patients, whose potential he has been able to bring to the fore. An edifying testimony for parents and society as a whole, at a time when the detection of fetuses with Down's syndrome more often leads to their elimination than to their acceptance and care.  

*ConsTriDel stands for multidisciplinary consultations specifically for children affected by Down’s syndrome or deletion syndrome. (another genetic disease caused by the loss of genes on a chromosome).