“Our son is treated like a guinea pig.” A Gard family testified Thursday in the freed dolphin to share their difficult daily life. The parents of Enzo, an almost 10-year-old boy who suffers from a form of trisomy unique to France, especially lamented the poor care by the medical profession and the administration of his son.
Polydisabled, Enzo has several malformations, including a sixth toe on each foot and hand.
“They watch us die with the butcher shop open,” protested the boy’s mother.
If this family has chosen to speak out about their second child’s rare disease, it is to set things in motion. The couple especially regrets that almost nothing is attended to, in the care that Enzo needs. Neither equipment nor certain medicines.
A unique case in France
Enzo’s parents, who has also suffered from partial epilepsy since contracting Covid-19, also consider it unacceptable that the chromosomal abnormality that caused their son’s disease was not detected during the mother’s pregnancy. In particular, during an ultrasound that, according to her, should detect her extra fingers.
Enzo represents the only case in France of trisomy 13 due to translocation 13.1. This, according to his parents, explains why he is not properly cared for: considered a deadly disease, “nobody 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 after birth and 90% before delivery.” first year”.
Source: BFM TV
