An anonymous donor comes to the aid of children
Photo Pierre-Paul Poulin
Thanks to a generous donor who has been touched by the story of the Journal, families in need will share three hyperbaric chambers offered free of charge by a man from Montreal who wants to keep his anonymity. Naomie Gendron, 6 years old, suffering from downs syndrome, benefits from these treatments. We see her with her mother, Genevieve Dion, in one of the rooms.
Sunday, 21 January 2018 00:00
Sunday, 21 January 2018 00:00
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Children with cerebral palsy have the right to treatment in a hyperbaric chamber, thanks to a generous donor, touched by a story in the Newspaper.
Without wanting to be identified, a man from the Montreal area has recently contacted The Newspaper to offer three hyperbaric chambers to a value of almost $ 18 000 each, which were ” most useful “. In our pages, last October, parents were throwing a cry from the heart for that these treatments are included in the care offered by the Régie de l’assurance maladie du Québec (RAMQ).
The anonymous donor has admitted to having been “deeply touched” by the families demanding the government’s help to get these treatments, which have greatly improved the quality of life of their young child with cerebral palsy or other neurological disorders. An avenue that remains, however, very expensive, whereas it costs between 2300 $ and 4000 $ to rent a hyperbaric chamber for 40 days.
Very committed to families, Charles-Antoine Sévigny, who himself has a young daughter suffering from cerebral palsy, has recovered from the rooms, and set up a sharing system to help the most children possible with ” brain damage “. Helped the physiatrist and specialist in pediatric rehabilitation at the hospital Sainte-Justine, Dr. Pierre Marois, he has created the group cerebral Palsy : early intervention and hyperbaric oxygen therapy, on Facebook, to coordinate its operations. To date, he has over one hundred members.
“It’s got to be a first test for families who have not necessarily had recourse to the hyperbaric because of the costs, and that this is a child below ten years,” says Sevigny, who moves himself to install large devices in the home.
Already, two families have had access to the service and acknowledge that, without this boost, the treatments hyperbaric would not have been possible. “It was a nice surprise. It is a new hope. With cerebral palsy, it treats the symptoms, but now, it is a new door that opens, ” says Élise Cormier, mother of Theo, two years old and suffering from cerebral palsy and spastic diplegia, which prevent it from working. Seeing the positive results on the tone, the force and the language of his son, Ms. Cormier dream now to launch its fundraising campaign to purchase a hyperbaric chamber.
The treatments are also encouraging, with Naomie, 6 years old, which began its sessions at the beginning of the month of January. Achievement of partial trisomy 14, monosomy partial 9 and intellectual disability severe, Naomie is followed by 15 specialists at the hospital Sainte-Justine. It is fed, does not speak and does not walk. “I would never have been able to pay for it “, said his mother, a single parent, Geneviève Dion.
No sign of the government
After a meeting with the political attaché to the minister of Health last September 15, the discussions with the government are at a standstill regarding the inclusion of these treatments in the Plan de l’assurance maladie du Québec (RAMQ).
“He showed a lot of openness and talked about mandating the INESSS (Institut national d’excellence en santé et en services sociaux) to reposition itself in the light of scientific evidences. But since then, we have no new, ” says Charles-Antoine Sévigny, a father of a child suffering from cerebral palsy.
A radio silence, ” aberrant “, according to Dr. Pierre Marois, a physiatrist and specialist in pediatric rehabilitation at the hospital Sainte-Justine.
“It would cost so much cheap, close to three million dollars to the government to install 125 rooms across Quebec. It would change the lives of hundreds and hundreds of families for good, ” laments the doctor, who has conducted more than 60,000 consultations in 37 years of career with children with cerebral palsy.
“We find it unconscionable that not all children who have access to it. We will continue to challenge the government. It is necessary to move it, ” said Mr. Sévigny.
The minister of Health Gaétan Barrette has refused an interview with the Newspaper on the subject. “There is no change in this file and what is not in our cartons to bring not more “, said by email its attached policy, Catherine W. Audet.