Hear from the Siblings: Sharing Their Journey with Medical Complexity

Aili Zissu is the older sister of Lyyli (Wilms tumor), who is twelve and a two-time cancer survivor. She is currently in her freshman year of college and is very focused on balancing life as a student and life as a cancer sibling.

Felix is a 14-year-old advocate and changemaker from Victoria, BC, who has inspired people around the world through his efforts to honour the memory of his sister Lexi. At just 5 years old, Felix wrote Don’t Floss Your Toes to raise funds for a cure for Blau syndrome, the rare disease that his sister was diagnosed with. Tragically, Lexi passed away at the age of six, a profound loss that changed Felix’s life forever. Instead of succumbing to grief, Felix turned his grief into action, creating the film Me, My Sister, and Blau to raise awareness and to continue his quest to find a cure, and then creating Lexi’s Legacy to continue driving positive change in her memory. Felix’s efforts have raised over $100,000, funding an annual Lexi’s Legacy Medical Research Grant. Felix has shared his story on stage at medical conferences across Europe and North America to advocate for better care for children with complex medical needs. His latest project, A Million Acts of Love, is a global movement inspiring kindness and empowering young changemakers through grants to start social impact projects. Felix continues to honor Lexi’s memory by spreading love, kindness, and hope around the world.

Yasmeen Faruqui is the oldest of three, with two younger sisters aged 13 and 10. Her 13-year-old sister has an undiagnosed progressive neuromuscular disease, and she has been advocating for both people like her and siblings like herself for 8 years now. Specifically, Yasmeen has been a part of Siblings With A Mission since she was seven and is now on their leadership board. Outside of advocacy, Yasmeen loves to swim, read, do art, and hang out with her friends and her cats. She is a 10th grader and living in Cincinnati, Ohio and is actively involved in the choir and extracurricular acapella group. She and her family are kind of wild, but they take the difficult situation that is their life and turn it into something they can make joy out of.

For over twenty years, Dr. Plante has worked with siblings of children with illness and disability and their families and has been involved with research and training to address siblings’ needs. She facilitates sibling groups through the SibLink© program at Hasbro Children’s and Bradley Hospital. She also provides individual and family therapy and group experiences for siblings at the hospital where she works and in community settings, such as summer camps. She trains medical students and psychology and psychiatry trainees to be attuned to siblings’ needs and presents on sibling adjustment to parents, school personnel, and other professionals in the community. Most recently, she was proud to partner with SPARCC members in producing a video about sibling needs, assessment, and intervention and has presented on this topic at the Association of Pediatric Oncology Social Workers conference. She has received federal funding for her past research on siblings of children with diabetes and autism and has collaborated with Dr. Lobato on federally-funded research on Latinx siblings of children with intellectual disability. She is the Director of Child and Adolescent Psychiatry Outpatient Services and Pediatric Behavioral Health Integration at Hasbro Children’s and Clinical Professor of Psychiatry and Human Behavior at Brown.