Opération enfant Soleil: “The mission keeps us really to heart”
Trois-Rivières — While children of their age spend their day having fun, the daily Kyliann, 3 years old, and his little brother, Kayden, 2 years, is punctuated by numerous visits to the hospitals. Suffering from a rare disease, these two children of Saint-Élie-de-Caxton named sun children of the Region benefit from the medical equipment acquired thanks to Opération enfant Soleil.
“The mission of Opération enfant Soleil keeps us really to heart. As much at the centre hospitalier de Trois-Rivières at CHU Sainte-Justine Montreal, my children use these facilities daily,” says Valérie Auger, the mother of two young children sun.
Kyliann and Kayden are suffering from a partial duplication of chromosome ARID1B caused by the syndrome of Coffin-Siris. “There are just two of my children who have this disease like that. It brings a lot of other problems, both at the level of the head than of the heart. It also reaches the overall development,” explains Valérie Auger.
When the disease has been diagnosed in Kyliann, the predictions were not encouraging. The doctors had informed the family that the little one could never speak nor walk. However, the small bites in the life, defied predictions by learning to walk. Kyliann, however, is awaiting heart surgery to close a valve.
On his side, Kayden follows a path more bumpy. He suffers from hypotonia, hyperlaxité, severe dysphagia pharyngeal, laryngomalacie and a significant delay in development. Very susceptible to infections, the boy must also be fed by gavage.
Grants to 84 437 $
Crossing the centre hospitalier régional de Trois-Rivières, spokesperson, Opération enfant Soleil, Alain Dumas and Ève-Marie Lortie, announced the grants of the agency for the region of the Mauricie and Centre-du-Québec. All in all, Operation enfant Soleil returns this year 84 437 $ for the care of the children.
The Centre hospitalier affilié universitaire régional du CIUSSS of the Mauricie and Centre-du-Québec has received the lion’s share of these grants, with an amount of 63 000 $. This will result in the purchase of an electric breastpump to a value of $ 3000. In addition Opération enfant Soleil and the ministry of Health are each the sum of $ 30,000 for the purchase of two incubators, neonatal services for newborns requiring special care.
In order to allow the purchase of a phototherapy lamp that is used for the treatment of jaundice in the new-born as well as a monitor, physiological multiparameter for the continuous monitoring of vital parameters of the child, the service Center of the Haut-Saint-Maurice receives a $ 12 225 $. For its part, the hospital of the Centre-de-la-Mauricie was a grant of 6820 $ for the purchase of an electronic scale and an otoscope, a device used during follow-up in children medicine day.
The House of birth of the River receives 2392 $ for the purchase of four pumps and is a device that neonatal resuscitation is safe. In closing, the Fonds Josée Lavigueur for Operation enfant Soleil offers the Challenge-Jeunesse du Haut-Saint-Maurice $ 675 for the financing of equipment of Kinball.