LThe story of Mylane and Marley gives hope. However, its outcome could have been quite different… Their parents, Théo and Mégane, today recount the ordeals they went through and will be present, with their twin daughters, this Friday November 29 and Saturday November 30 on the set of the 38e edition of the Telethon.
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Théo, 29, remembers his joy at the announcement of his partner's pregnancy. “It was February 14, 2023. The pregnancy was not at all planned, since Mégane was taking the contraceptive pill, but it was a happy event. » Then during the first ultrasound, the couple had the “pleasant” surprise to learn that they were expecting not one, but two children. Binoculars. While living in Nantes (Loire-Atlantique), for organizational reasons and faced with the challenge represented by the birth of two children, the couple made a decision that would change the course of their history: moving to Rochefort (Charente-Maritime) near their parents.
The hammer blow
“The pregnancy and childbirth went very well, Mylane and Marley were born on October 2 at the Rochefort maternity ward,” says Théo. A few days after the birth, on the occasion of the Guthrie test, the nursing staff then offered the parents an experimental screening for their daughters: the AFM-Téléthon Depisma program.
This screening makes it possible to early diagnose childhood spinal muscular atrophy, a rare genetic disease that affects motor neurons leading to progressive muscle atrophy. As we can read on the AFM-Téléthon website, “in its most serious form (SMA type I, 60% of cases), 95% of affected children die before the age of 2. » With 124 new cases per year in France, spinal muscular atrophy is the second most common autosomal recessive disease of childhood after cystic fibrosis.
ALSO READ Telethon 2023: “Every day is a fight for my daughter Ivy” “At that time, we did not know about this disease at all, and, moreover, we did not particularly seek to find out about it. We were happy as new parents,” recalls Théo. The parents accepted the screening and left the maternity ward with peace of mind.
But 8 days after giving birth, Théo and Mégane received a call from the Bordeaux hospital, summoning them about an “anomaly” in the results. The doctors then told them that the screening for spinal muscular atrophy was positive. But there is no time for parents to be overwhelmed by the news. A battery of tests confirmed the diagnosis and its form, type II. This form occurs between the ages of 6 and 18 months and the life expectancy of patients varies.
“A priori, everything is fine”
“The medical profession then directed us towards gene therapy,” recalls Théo. The twins were therefore treated with a single injection. For two weeks, Mylane and Marley remained in the hospital for observation, before returning home. After several months on corticosteroids and physiotherapy sessions, “we realize that everything is going very well”. “In January, we begin to relax and today, the girls are doing wonderfully,” rejoices their father.
If Mylane and Marley are in good health to date, it is thanks to the Depisma pilot program, tested in New Aquitaine and the Grand Est. “That’s why our move was so important. If we had stayed in Nantes, the doctors would not have offered us this screening before the symptoms appeared,” says Théo.
ALSO READ How to break bad medical newsToday, the twins are 13 months old. And even if there remains a long-term gray area on the total healing of his daughters – “the subtlety of this therapy is that we do not have much perspective, since the first child to have received this treatment is 5 years old” – Théo is very optimistic: “A priori, everything is fine. »
“We were very lucky”
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Answer
Nicknamed the “young ladies of Rochefort” by the singer Mika, the godfather of this 38e edition, the girls would have experienced a different fate without the AFM-Téléthon according to their father. “Without them, we would have learned about the disease at the first symptom, it would have been too late. Then, without the Généthon [le laboratoire de thérapie génique du Téléthon, NDLR]we would not have had access to the gene treatment that saved our daughters. »
ALSO READ “Lucas exploded the life counters”: a child is cured of incurable brain cancerLike the rest of the Telethon, the twins' parents plead for more financial resources for screening and treatment of genetic diseases: “We were very lucky, and everyone should be the same. »
