Avery and Alliya’s Story: How We’re Nurturing Relationships

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Listening to CTN Service Planning Coordinator Julie speak with Stephanie, mom to 10-year-old twin girls, Avery and Alliya, is like walking into a family conversation.

Avery, who likes sporty activities and Alliya who likes creative ones, have Hallermann-Streiff Syndrome (HSS) and facial differences. Both also have a gastrostomy tube. You can feel the strength of the relationship between both women and the girls. Julie and Stephanie’s connection is central to the support that is provided to Avery and Alliya. In fact, it was strong relationships with partners in the community that first brought the girls to Julie’s attention, after learning there was a French speaking family with twin girls needing support.

As a Francophone family, many of the services and diagnostic testing that the girls needed were only done in English. Julie stepping in and connecting the family with culturally responsive supports was a gamechanger. Over the last seven years, Julie has watched them grow up. She knows their likes, their dislikes, and works to find activities that suit their individual personalities. In what has become a defining moment for the family, last year Julie referred the girls to a camp called About Face, an organization that promotes the emotional and mental well-being of individuals with facial differences.

Through About Face, Avery and Alliya have written a book, participated in a commercial and most of all found a sense of belonging. “I like when we see other people who think like me, who have differences like me, I feel like I am not alone,” says Alliya. Being able to rely on Julie for support has made a critical difference in the lives of the family. “The goal of service coordination is to support parents and then set them free,” says Julie.

Avery and Alliya's story was first shared in CTN's 2020-21 Annual Report.