2023-06-23 19:36:48
The parents of Enzo, soon to be 10 years old, suffering from a form of trisomy unique in France, testify in the Dauphiné Libéré regarding their difficult daily life and the poor medical care of their sick child.
“Our son is treated like a guinea pig”. A family from Gard testified this Thursday in Le Dauphiné released to share their difficult daily life. The parents of Enzo, a little boy of almost 10 years old, suffering from a form of trisomy unique in France, particularly deplored the poor care by the medical profession and the administration of their child.
Polyhandicapped, Enzo has several malformations, including a 6th finger on each foot and hand.
“We are watched to die with the butcher open”, protested the mother of the little boy.
If this family has chosen to speak out regarding the rare disease of their second son, it is to get things moving. The couple particularly regrets that almost nothing, in the care that Enzo needs, is taken care of. Neither equipment nor certain drugs.
A unique case in France
The parents of Enzo, who also suffers from partial epilepsy since contracting Covid-19, also consider it unacceptable that the chromosomal abnormality at the origin of their son’s illness was not detected during of the mother’s pregnancy. In particular during an ultrasound which should, according to her, detect her extra fingers.
Enzo represents the only case in France of trisomy 13 by translocation 13.1. This, according to his parents, explains why he is not properly taken care of: considered a fatal disease, “no one wants to deal with it”.
According to data from Public Health France, “95% of fetuses with trisomy 13 die in utero. The vital prognosis is not very favorable since half of the children die during the first month following birth and 90% before the first year”.
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