Fiona Gould’s journey through her second pregnancy took an unexpected turn at 28 weeks when a routine scan revealed a possible brain abnormality in her unborn son, Archie. Further testing delivered a shocking diagnosis: Archie would be born without eyes, a condition resulting in complete blindness with no perception of light, a rarity even in the Sydney region where they reside. This condition, referred to as being “black blind,” placed Archie among a very small group of children with this level of visual impairment.
Compounding the challenges, Archie was also diagnosed with Sox2 syndrome, a rare genetic disorder affecting 1 in 250,000 births. His case was particularly unique, with only one other recorded case worldwide. Despite the overwhelming odds, Archie’s family celebrated his arrival in January, embracing the strength and resilience he displayed from the beginning.
However, Archie’s health struggles extended beyond his visual impairment. He experienced moderate hearing loss, recurrent respiratory infections requiring hospitalization, a long-term feeding tube for nutritional support, and severe motor delays that impeded his ability to lift his head. Fiona, navigating the complexities of Archie’s care, faced the daunting task of managing numerous medical appointments and therapies, all while striving to maintain family normalcy.
Throughout this journey, Fiona shared her experiences and the challenges of preparing for and raising a child with significant disabilities. Despite initial feelings of shock and anxiety, she has become Archie’s unwavering advocate, celebrating his milestones and the joy he brings to everyone around him. Her story highlights not just the difficulties but the profound love and resilience at the heart of parenting a child with special needs.
