Receiving Zara's diagnosis was life-changing for our family. It gave us a much better understanding of her needs and opened the door to the right supports and therapies. The journey to diagnosis wasn't straightforward—we always knew something wasn't quite right and had to continue advocating for answers. After initially being diagnosed with global developmental delay and identified as a Fragile X carrier, more extensive genetic testing finally confirmed DLG4-related SHINE syndrome just before her sixth birthday.

Today, life is filled with physiotherapy, occupational therapy, psychology appointments, and the adventures of primary school. Zara learns and grows at her own pace and may be behind many of her peers, but she is surrounded by an incredibly supportive school community and two wonderful friends who have been by her side since preschool.

Zara also lives with ADHD, and anxiety is one of her biggest challenges. Emotional regulation, meltdowns, and anxiety can make everyday activities and family outings difficult, but each day we continue to learn, adapt, and celebrate every achievement—big and small. While this journey hasn't always been easy, Zara fills our lives with joy, and her diagnosis has brought us greater understanding, direction, and hope for the future.