By Vincent Malboeuf
Published on 23 Sep 22 at 16:13
See my news
Follow this media
Ewen is a pupil in CM1 at the public school of La Chapelle-Heulin, in the Vineyard of Nantes (in Loire-Atlantique). He loves football and has practiced at FC Entente du Vignoble since he was 5 years old.
This Thursday in September, after leaving school, he teases leather with his little brother Loan in the garden of the house, in the village of Morsonnière. Jump in the trampoline, play on the small slide, in front of the tender eyes of his mother Laëtitia. This is a child like any other. Lively.
The verdict one month after the birth
But Ewen was born with a disease. Cystic fibrosis. “He weighed 3.3 kg at birth, nothing abnormal. But the following days, he no longer gained weight, ”says Laëtitia Ynizan. A screening injection at the level of the heel is essential.
The verdict falls a month later. Shock. “I thought I was going to wake up! Get out of the nightmare. We don’t think about that at all…because no one has this disease in our two families. »
Neither that of Laëtitia, nor that of Jérémy Colliaux, his companion. Carriers of the gene without knowing it, there was a one in four chance that parents would pass the disease on to their children. Loan escaped it (he is a healthy carrier). Not Ewen.
“Hard to gain weight”
Very quickly, from one month, the baby must take capsules before each bottle so that he gains weight.
There are different symptoms of cystic fibrosis: for Ewen, if he had no respiratory complications, he had trouble gaining weight when he was little. So at his meals, we must put fat, oil, butter, fresh cream…
Respiratory physio sessions three times a week, appointments once a month at the CHU… the parents have to come to terms with Ewen’s illness. Laëtitia, optician, can only work part-time.
Eighteen drugs a day
Today, the child is still closely monitored and needs to take a quantity of drugs “to make him well”. Eighteen in total: “six in the morning, four at noon, two at snack time and six in the evening”, lists the mother. More the aerosol every night.
Sport also wants to be a excellent remedy. “It’s recommended, because it allows you to ventilate your lungs.” Barrier gestures are adopted well before the Covid at Ewen. “He wears the mask every time at the CHU, washes his hands very regularly. It’s natural for him. »
A new effective treatment?
For a year and a half, two new drugs (Orkambi® and Kartrio®) have allowed the child from La Chapelle-Heulin to cope better with illness. “For the first time, it was no longer crowded this winter. We also found him less tired, ”say the mum and dad.
Not being negative and living “as normally as possible” is their credo.
What we want is for him to completely recover from cystic fibrosis. The latest drugs give hope. Life expectancy continues to increase*, so we must continue to support the association Vaincre la mucoviscidose and appeal for donations.
This Sunday, September 25, it will hold a stand on the occasion of the Virade of the hope of Loroux-Bottereau (the only one in the Nantes vineyard) which offers many activities and something to occupy the children (inflatable castle, games stands, etc.). Ewen shouldn’t be bored.
* According to Inserm (National Institute of Health and Medical Research), the average life expectancy of a patient is between 40 and 50 years, whereas it was only 5 years in the years 1960.
Was this article helpful to you? Note that you can follow L’Hebdo de Sèvre et Maine in the My News section. In one click, after registration, you will find all the news of your favorite cities and brands.