Mother of a severely disabled child vulnerable to infections, CAQ MP Marilyne Picard experienced distressing moments during the COVID-19 pandemic, which could have been fatal for her daughter. Despite everything, health measures have helped reduce the presence of other viruses.
• Read also: The hard year of 4 politicians
Nine-year-old Dylane has a rare genetic disorder. ” [Elle fait] a lot of epilepsy, she doesn’t walk, she doesn’t talk, she doesn’t eat either, she feeds by force-feeding, so she is in a wheelchair and she gives super beautiful smiles! », Launches the member for Soulanges, in an interview with our parliamentary office.
“COVID-19, oh, my lord! I can’t be sure that she would have died from it, but I can be sure that we would have spent a lot of time in the hospital, it would have been really intense ” – CAQ MP Marilyne Picard
For Dylane, a simple cold can turn into a real struggle to survive. A small runny nose usually causes a fever, often seizures.
“When she starts having a seizure, it often doesn’t stop. So we must [se rendre] in Sainte-Justine, in the trauma room, with heavy medication to stop her convulsion, ”says Marilyne Picard.
His longest convulsion lasted five hours, which resulted in loss of skills for the child.
“I disinfect everything”
Contracting the coronavirus could thus have been fatal for Dylane. When one of his brothers started to have flu-like symptoms, it was a real upheaval in the house, the time to receive the results of the screening test. The patient was isolated in the basement, while the youngest did not come out of her room. “I was disinfecting everything,” she recalls.
But what has also bugged the MP in the past year and a half is the fear that she and her partner will catch the coronavirus and cannot be at their daughter’s bedside.
“If both of us have COVID-19, even if we’re not that sick, she’s going to Sainte-Justine, that’s for sure, who’s going with her? I don’t want her to be alone, ”she said compassionately.
Lack of stimulation
The pandemic has made life difficult for the family, which has a total of five children, especially during the first wave. As Dylane’s specialized school was closed in the spring of 2020, the lack of stimulation greatly influenced his sleep.
“Physiotherapy, occupational therapy, all these specialists take care of it at school. They make songs, rhymes, they play all the time […] they are hyper stimulated. At 6 or 7 a.m. in the evening, she falls asleep and has good nights when she goes to school. But when she no longer goes to school, during the day she is bored, she screams a lot, so teleworking is not easy, the nights are not easy ”.
Used to being independent, the other siblings who still reside in the family home have nevertheless adapted to distance learning. “Émile, who is eleven years old, went to his room and did his little business. It is rare that he asks me for help ”.
Long live health measures
Ironically, health measures have a positive aspect for sick and severely disabled children. Hand washing and wearing a mask significantly reduced the flow of other viruses.
“For the health aspect, for us, oddly, it’s really better, slips Mme Picard. Dylane has never been so good in her life. Since March , she doesn’t have a runny nose! “
However, as long as COVID-19 is circulating, there are risks for the child. The vaccination of the greatest number is essential for the small family.
Dylane cannot wear a mask as she injures herself constantly trying to remove it. “So, with her, you can’t go out at all, you can’t go shopping, you can’t do anything until at least 75% of people are vaccinated. But she goes to school, because it’s a controlled environment ”.