Stronger together

A young Cree teenager who became quadriplegic was finally able to see his family again after two years of hospitalization, thanks to the coordinated efforts of teams from the Montreal Children's Hospital (MCH), the Cree Board of Health and Social Services of James Bay (CBHSSJB) and Make-A-Wish Canada.

Javen Loon became quadriplegic two years ago after fracturing his cervical spine while diving into a lake in his community, Mistissini. He cannot breathe on his own; he depends on a diaphragmatic pacer, which forces his diaphragm to contract to breathe in. He also has a tracheostomy, which is an opening in the trachea, to help him breathe. Even if he can eat by himself, he prefers feeding through a gastrostomy tube, which takes nutrition directly into his stomach.

The teenager, now 17, requires constant supervision, nursing care a few times a day and access to a respiratory therapist on call. He has been living at the Montreal Children's Hospital since his accident due to a lack of resources in his area.

Javen has not seen members of his community since his fracture, with the exception of some family members who came to visit him in the hospital. His greatest wish is to return to Mistissini. This is why the different teams have decided to unite to offer him at least one weekend at home, with his family.

A complex organization

Given the care that Javen needs, such a move is not something that can be done easily. Social worker Camille Paré-Roy, from the CBHSSJB, was able to coordinate all the arrangements required to transport, accompany and accommodate the teenager, with the help of several other partners, including Martine Constantineau, assistant director of Cree Patient Services.

Assisted by MCH staff, including respiratory therapist Nader Hanania, pediatric intensivist Tanya Di Genova and nurses Raffaella Todaro and Maria Protopoulos (whose idea it was), Javen was finally taken by ambulance to the airport last July, flown to Chibougamau and then transported by ambulance to Mistissini. There, he was staying in a seniors' residence for the weekend.

His relatives organized him a big traditional feast in a community centre, where all his family and friends were gathered.

"I've never seen him so happy. Usually, Javen is given medication once or twice a day to relieve his stress, which causes him spasms. In Mistissini, he didn't take it; he didn't need it, he was so relaxed," says Dr. Di Genova.

The evening before his departure, his family and friends came to his window with candles to accompany him on his last night in his hometown. It was a particularly touching moment that will be remembered by all people who were present.

Sincere thanks to Make-A-Wish Canada, the CBHSSJB and Jordan's Principle, from the federal government, whose funding made this project a reality. Thanks also to Javen's family, as well as the local and psychosocial teams who helped make the event a success.