Singaporean Family of Ten Defies Medical Odds to Care for Daughter with Rare Genetic Disorder

A Singaporean couple and their seven children share their journey caring for baby Eva, a 15 month old survivor of the ultra rare campomelic dysplasia.

By: AXL Media

Published: May 2, 2026, 5:50 AM EDT

Source: Information for this report was sourced from The Straits Times

A Diagnosis of Ultra Rare Proportions

The birth of Eva Lim in February 2025 introduced her family to the complexities of campomelic dysplasia, a skeletal condition so rare it affects as few as one in 200,000 people globally. Dr Koh Ai Ling, a consultant at KK Women’s and Children’s Hospital, noted that the disorder stems from mutations in the SOX9 gene, which disrupt the normal development of bones, cartilage, and reproductive organs. Infants born with this condition typically present with bowed limbs and a dangerously small chest cavity, a physical limitation that often prevents lungs from maturing sufficiently to sustain life.

Choosing Life Against Clinical Advice

Early in the pregnancy, medical professionals identified numerous physical defects and suggested that the foetus might not be viable, yet the couple remained steadfast in their decision to carry to term. Eunice Wong, who had previously experienced miscarriages, expressed that her Catholic faith and the baby’s own persistence influenced their refusal to terminate. The parents also opted out of invasive diagnostic procedures like amniocentesis, concluding that the risks of the test outweighed any potential benefit to Eva’s condition. This decision set the stage for a household transformation centered on specialized care and collective sacrifice.

Preparing a Household for Significant Change

Anticipating the high costs and intensive time requirements of a special needs child, Lim and Wong sat down with their seven other children to explain the impending shifts in their lifestyle. The children were informed that discretionary expenses, such as private tuition and sports camps, would be redirected toward their sister's medical needs. According to Wong, the conversation was essential to foster a sense of shared responsibility and to prepare the older siblings for the reality that their parents would be less available for routine activities as they prioritized Eva’s survival and rehabilitation.