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This young 24 year old with Down syndrome, spokesman for the group "Friends of Eleanor" is fighting for autonomy and protection of people with trisomy 21.
The group "Friends Eleanor "was born after the International Day of Trisomy 21, which took place in Paris on March 21. The association has found a spokesman of choice: Eleanor Laloux, 24, Down syndrome. She recently went to defend the rights of Down syndrome before the Ombudsman of the Republic Jean-Paul Delevoye. His parents have created the group with other parents of handicapped children and friends of their daughter. Their aim is first in line "Call of 25 March" to State and from which they are signatories: "We demand recognition the dignity of all people with trisomy 21 and their rights . These families facing the illness of their child are fighting against ignorance of the disability that often leads parents whose fetus is a carrier of the disease to abort. Maryse Laloux's mother, Eleanor admits: "If my obstetrician told me [Pathology Eleanor] during my pregnancy, I would have panicked and made the biggest mistake of my life " . In France, 96% of fetuses with Down syndrome who are screened are aborted. Eleanor
is the mascot of the collective. Before the journalists present for the presentation of the group, she leads the press conference without complex, as any critic. With great humor and insight, she recounts her journey that proves that a disabled person can have a normal life - although the situation varies greatly from person to person, all are not equally affected with Down syndrome by the disease. At 24, she attended the same school as the children of his age and was hired on permanent service billing general health of Arras. Eleanor today dream of independence: "I fought thoroughly for my job and I am proud to be mostly arrival and earn my living. I would like my independence, being alone in one apartment and do what I want [...]. I feel a little more resourceful. I like being alone in the house and have my privacy . His father Emmanuel has a refrain: "The more we promotes autonomy trisomics, the less they are expensive. Eleanor did not cost the state . Eleanor also talks about his disability, " For me it's sometimes hard to bear. [...] But mostly I feel a little like the others. [...] I am what I am. I do things that some people do not know how. I feel proud with that .
addition to better integration of the disabled, the group asks government to fund research for a cure against trisomy 21. It is for now entirely on private funds, while nearly 100 million euros are spent each year to screen for Down syndrome.
last claim: "Do not spread PGD [preimplantation genetic diagnosis, Ed] to trisomy 21 in the draft law on bioethics . Before the revision of the bioethics law of 2004 to be held this year, the National Advisory Committee on Ethics (CCNE) ruled in favor of the measure that would make the trisomy " the first stigmatized disease in all cases Pregnancy "according to the collective. For now the preimplantation diagnosis is allowed only in the case of an inherited disease identified in the parents. Raphaëlle Desjoyaux
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