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Trisomy 21: taking care of children
March 21, 2015 marks the 4th International Down Syndrome Day, an important event that reminds society as a whole that if disability remains a painful issue, happiness is possible, for both children and families.
On March 21, 2015, the 4th International Down Syndrome Day (formalized by a UN resolution). The purpose of this event is to raise awareness and inform citizens about this insufficiently known pathology, and about the prejudices from which those affected by it suffer. To illustrate the campaign, parents who pose with their child (ren) with Down’s syndrome with this strong message “The difference, let’s live it together like a chance”. These families remind society as a whole that happiness is possible despite disability.
Having Down’s syndrome in France
The generalization of prenatal diagnosis of trisomy, the first intellectual disability of genetic origin (1 conception in 700) has considerably reduced the birth of children with Down’s syndrome. And France is preparing to market a new prenatal diagnostic test for Down’s syndrome. Today, 21% of fetuses detected with Down’s syndrome during pregnancy are subject to medical termination of pregnancy (IMG). Between 300 and 500 children with this disease are born each year. It is estimated that around 50 people currently have trisomy 000 in France. Most babies with Down’s syndrome are born today either because their mother refused to be tested or because they decided to keep the child. In recent years, thanks to effective care, the life expectancy of people with Down’s syndrome has approached that of the general population. The dean is now 21 years old. Advances in medicine have made it possible to considerably improve the quality of life of people with Down’s syndrome.
Trisomy 21: care and monitoring of children
It is sometimes at birth that the disability of trisomy 21 is discovered. While some signs visible to the naked eye can alert doctors, it is still necessary to perform a karyotype for a diagnosis to be made. Some babies with Down’s syndrome have congenital complications at birth (heart, digestive malformation, etc.) that can nevertheless be treated. Apart from these medical problems, the start of life for a child with Down’s syndrome is not particularly difficult. “These children pursue an early childhood which is rather calm,” explains Jean-Marie Le Méné, president of the Jérôme Lejeune Foundation. They are dynamic, lively and deliver a lot of affection. Corn their development is much slower depending on the degree of intellectual disability. They will walk later, talk later ”. Specialized medical monitoring is therefore essential and beneficial from the first months. At the Lejeune Institute, doctors see babies and young children with Down’s syndrome every day. The consultation with the doctor lasts one hour, the time for a complete medical check-up. The institute works in close collaboration with specialized teams (physiotherapy, speech therapy, psychomotricity). ” Early rehabilitation allows each child to develop their abilities to the best of their ability, underlines Dr Aimé Ravel, pediatrician at the Jérôme Lejeune Institute. For example, a child with Down’s syndrome has a motor skills deficit. You have to help her reorganize her body plan by giving her massages and helping her move. It’s also a way to make it come alive. ” Parents can turn to professionals for this care. Children can also be accommodated before the age of 6 in early medico-social action centers (CAMSP). The care is 100% taken care of. When they are older, parents can call on a Special Education and Home Care Service (SESSAD). However, if early rehabilitation is important, the family environment remains decisive.
Schooling for children with Down’s syndrome
Since the 2005 law on disability, the regular school is open to disabled children. It is extraordinary progress. Young people with Down’s syndrome can thus benefit from more or less pronounced school integration. When possible, schooling takes place in “normal” classes, in principle with the implementation of specific support. In some primary schools, children are accommodated in CLIS (School integration class). “This solution is preferable,” notes Dr Aimé Ravel. The mainstream school system is not necessarily suitable. It is difficult for children with Down’s syndrome to follow a regular education. »In some colleges and high schools, there are UPIs (Pedagogical Integration Units). In all cases, the educational project must be carried by the family and the teaching team with the help of a school life assistant (AVSI). The fact remains that the means are not present today to allow children with Down’s syndrome to have the education that suits them.
The hope of research
The aim of research on trisomy 21 is to develop a treatment that improves their intellectual and cognitive functions. “That’s all our work at the Jérôme Lejeune Foundation. To gain a better scientific understanding of this handicap in order to be able to give people with Down’s syndrome some additional skills that would make them autonomous. Their potential is still far from being solicited. ” Jean-Marie Le Méné, President of the Jérôme Lejeune Foundation