Jenny Meger de Cecco, mother of Eléna, a 19-month-old little girl suffering from a rare illness, talks about her daily life through “The Saga of Lélé”, touching and poetic books.
Long black eyelashes, beautiful blue eyes… Eléna, 19 months old, is as beautiful as a heart. The little girl is waging a heavy fight against illness; behind her, her entire family is mobilized to support her. “She’s a fighter, she’s overcome incredible things.” underlines Jenny Meger de Cecco, her mother who decided to tell the story of the family’s daily life with Lélé, her little nickname, in a series of illustrated books entitled “The saga of Lélé”.
The illness made a sudden irruption into the family’s life
The first volume is devoted to the outbreak of the disease. A clap of thunder in a blue sky as the couple swims in happiness after the birth of their first child. “Elena was a calm child. One day when she was 3 months old, her left eye and hand started blinking. She has what we call a left hemicorporal crisis. Helicoptered to Montpellier, the little girl fell into a coma even though the tests revealed nothing abnormal.
“We were then told that he probably wouldn’t wake up and that we had to prepare to say goodbye to him.” remembers Jenny. But the little fighter defies the prognosis and comes out of a coma. A whole series of examinations follows: lumbar puncture, MRI, scanners, blood tests, genetics… “ A journey which is the subject of the second volume of the saga” Jenny points out.
Genetic analyzes reveal an unknown variant
Finally, genetic analyzes revealed an unknown variant on the Gabra gene (epilepsy gene). “As this variant is unknown to date, we have no visibility on what its life and evolution may be like. We live day by day” Jenny points out.
Antiepileptic treatments have no effect. “Elena has 8 to 10 epileptic seizures per day whether she is on medication or not. specifies his mother. The little girl cannot hold her head up alone, nor move her arms and legs. “But she manages to eat on her own even though we were told she would have to be catheterized“.
The diagnosis causes profound upheavals in the couple’s life. Jenny, who was an executive assistant at Domazan, has to leave her job to take care of her daughter full-time. The couple who are building a house in Vers Pont du Gard must meet their loans with less income. A house that must therefore be adapted to Elena, who no one knows if she will one day work.
“A friend suggested I write about what we were going through”
The family’s life is punctuated by the countless treatments that Elena needs: physiotherapy, psychomotor skills, visits to hospitals…
“I must admit that we tried everything including alternative medicine, magnetizers… We even went to Lourdes. At one point, faced with this ordeal, without work I no longer knew where I was. A friend, Elena’s godfather, then suggested that I write” explains the young mother.
Yes, but write what? “I didn’t see myself inventing stories so I chose to write our daily lives, what we had experienced and what we experienced with Lélé. To put words on evils. I told myself that it could help other families and other children.”
The first volumes were very successful
Jenny writes the texts and also takes care of the illustrations. Very poetic drawings, in the form of bubbles. The first two volumes, self-published on Amazon, met, to his great surprise, with great success. With very nice feedback from other parents who congratulate her for her touching, creative, poetic texts and drawings….
Midi Libre – C.M.
Jenny has also just released this June a special edition of the saga, “Elena and Yuuok, the mystical adventure among the Maya” a journey to the land of Lélé’s dreams within the Maya civilization… The next book, in writing class will evoke Halloween. Another will follow for Christmas.
Jenny’s books touched the organizers of two book fairs in the Rhône in which she will participate next fall. She also hopes to be able to hold other shows in the region and particularly in Gard. To share the daily life and the fight for Elena’s life.
