Matthieu and Laura, parents courage for their little Léandro, a baby suffering from a serious rare disease

Une association, et des actions, se sont formées autour du couple salindrois et de leur petit garçon. Midi Libre – A.S.

Léandro, a baby who is barely a year old, lives with his parents in Salindres near Alès. Since his birth, an extremely rare disease has jeopardized his daily life.

Léandro has just celebrated his first birthday. A year of love and concern for his parents, Matthieu and Laura Melzani, because their child suffers from a rare genetic disease linked to the KCNT1 gene. The disease broke out when their “little warrior“, as he calls him, was only 18 days old.

“Léandro suffers from migrating partial epilepsy, the effects of which are daily and recurrent in the form of continuous seizures that move from one side of the body to the other. It is an incurable drug-resistant neurological disease that causes severe long-term cognitive disorders and requires constant care that over the years will prove increasingly costly and derisory. There are about twenty cases in France”, explains Matthieu Melzani.

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And he adds, leaning over the stroller where Léandro is dozing, one of whose eyelids begins to vibrate: “There, he has a seizure. We monitor him constantly, even at night. It leaves us no respite.”

A difficult family life

A caregiver, his mother no longer works in order to be by his side. Faced with difficulties in feeding himself, Léandro underwent a gastrostomy on December 16. The operation allowed the removal of the nasogastric tube. A relief for his parents who, after moments of discouragement, now want to provide maximum comfort to their little boy.

“For several months, we have been renovating our house since we know that he will suffer from multiple disabilities throughout his life. A life expectancy whose length we do not know. At Necker Hospital in Paris, we were told that research is underway on the disease. What we hope is that it can lead to a drug that will space out and reduce the attacks that tire him out.”

An association to support them

A wave of solidarity is underway thanks to the creation of the association “Léandro notre super-héros” initiated by teachers from the Jean-Baptiste-Dumas college in Salindres where Matthieu is a territorial agent.

“It allows us to collect donations that would help us equip the house with a lifting platform and buy a stroller and a suitable car seat, and would be devoted to intensive courses so that Léandro progresses in his psychomotor development because he suffers from axial hypotonia. On January 25, the association will organize a country evening at the Espace Georges Brun in Saint-Privat-des-Vieux from 7:30 p.m., then a concert with two musical groups and the college choir on March 21 at 6 p.m. in the hall Becmil”, announces the couple to whom the festival committee, the association le cœur de Salindres and the festivities leisure commission have given them a check for €1,100, the fruits of the donations collected during the Christmas market (also partly donated to the Téléthon). “We know it's going to be complicated. We're moving forward day by day”, conclude Matthieu and Laura.

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