Near Nantes. Cystic fibrosis: the life of Ewen, 9 years old, improves thanks to new drugs

By Vincent Malboeuf
Published on 23 Sep 22 at 16:13

The Weekly of Sèvre et Maine

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Ewen (left), alongside his parents Laëtitia and Jérémy, and his little brother Loan. ©HSM

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…

Laëtitia, mother of Ewen with cystic fibrosis

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.

Videos: currently on Actu

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. »

The family lives in La Chapelle-Heulin, in the Nantes vineyard. ©HSM

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

Laëtitia, member of this association Vaincre la mucoviscidose

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.

The whole program of the Virade de l’espoir to read on the local pages of Loroux-Bottereau.

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The article is in French

Tags: Nantes Cystic fibrosis life Ewen years improves drugs

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