3-year-old Mikaële Laure Personna remains a mystery to her doctors, so much so that she spent 17 long months at the Montreal Children’s Hospital, where her parents visited her every day.
“It’s not been a day that we haven’t been to the hospital,” recalls her mother, Rachelle Toussaint.
Her daughter was born at 33 weeks pregnant. After a first week of observation in the hospital, a mass appeared on his right arm.
“And that’s where it started …”, breathes Mme Toussaint, 47 years old.
Very rare disease
Mikaële Laure suffers from a very rare genetic disease called myofibromatosis, which produces benign tumors in her body. The diagnosis took months to be discovered, as new masses appeared with each MRI scan.
“The throat, close to the brain, in her neck, her stomach, her nose,” says her mother.
But that’s not all. Shortly after the first mysterious mass, Mikaële Laure was also hospitalized urgently, in severe respiratory distress.
“We saw the entire hospital descend on her, everyone was running into her room. This is when we understood that it was very serious, ”says his mother.
So even before she was 2 months old, the little girl needed a tracheotomy to breathe, which she still keeps today, at 3 years old.
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Mikaële Laure must also be fed by force-feeding.
Catherine Millar Pediatrician
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“There are things that remain mysterious [chez] she. His difficulty in eating and his need for oxygen, for example, it is not clear […] It is a rather particular case which remains with strangers, it comes out of the books ”, explains the pediatrician of the Montreal Children’s Hospital Catherine Millar, who follows the family.
His relatives, however, remain optimistic.
“We said to ourselves that if this child had not been born to live, she would not have survived her first night”, blows her mother.
For many months, the whole Laval family, his mother, his father, Jean Fritzner Personna, and his brother, Raphaël, congregated in his hospital room.
After 17 months, the little girl was finally able to go home.
But each week was punctuated by visits to the hospital.
Constant monitoring
Her daughter had to be watched 24 hours a day, even at night, as she would only have had seconds if her tracheostomy tore off in her sleep.
Her disease has no cognitive impact, says Dre Millar, who sees Mikaële Laure transform into a cheerful and endearing young girl.
She runs and dances constantly, dragging her medical device pole with her, as if nothing had happened.
This spring, her mother even heard her whisper a first “mother”, despite the tracheotomy.
Doctors hope that one day Mikaële Laure will be able to breathe and feed on her own, even if, for the moment, this is not yet possible.
Myofibromatose
Appearance of benign tumors all over the body
Respiratory and digestive problems not clearly related to the disease
