Baby Eva: Carrying Hope, One Day at a Time

Before Eva was born, she had already taught her family what it meant to carry hope. 

When Eunice and her husband, Eu-Jin were preparing to welcome their eighth child, they never imagined that a routine prenatal appointment would mark the beginning of a journey filled with uncertainty. 

As further scans were carried out, it was revealed that their unborn daughter had severe skeletal abnormalities. It was heartbreaking. Doctors explained that she might not survive and discussed the option of terminating the pregnancy.

For Eunice and Eu-Jin, however, there was never any doubt that they wanted to give Eva every chance at life. They chose to carry Eva to full term, embracing the unpredictable road ahead with love, faith and unwavering hope for their daughter. Together, they also took time to prepare their seven children for the arrival of their “special sister”, as they lovingly introduced Eva, reminding them that although life would look different, she would always belong and be deeply loved.

When Eva was born in January 2025, she was diagnosed with Campomelic Dysplasia, an ultra-rare genetic condition that affects the development of bones and cartilage throughout the body. From Eva’s first moments, she required intensive medical care. She spent her first two months in the neonatal intensive care unit, supported by breathing equipment and accompanied by a circle of care that stood beside her through her most fragile moments. 

Bringing Eva home marked the beginning of a very different chapter for the family. Hospital visits, complex medical terminology, specialist appointments and medical equipment gradually became part of everyday life. 

Caring for Eva meant adapting to new routines, from supporting her breathing with a ventilator while she slept, to thoughtful planning around her feeding needs, all while remaining prepared for the unexpected. 

Yet, through it all, every new challenge was met with the family’s steadfast love and quiet determination to understand Eva’s condition, and give her the best possible care.

Today, Eva is among the small percentage of children with Campomelic Dysplasia who have lived beyond their first birthday, a milestone her family does not take for granted.

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“Being a caregiver to someone with a rare disease is a privilege. We get to witness first-hand, perhaps for the first time in Singapore or even the world, what that person can and cannot become.”

—Eunice, Eva’s Mother

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Rather than focusing on what Eva may never be able to do, the family has learnt to celebrate every step she takes forward, however small it may seem

For them, RDSS has become a source of belonging, where they found a community that offered genuine understanding and comfort during life’s most difficult moments. 

Looking ahead, Eunice and Eu-Jin hope that Eva will continue to grow surrounded by love, understanding, and acceptance. More than anything, they hope people will see beyond her diagnosis and recognise the bright, determined little girl she is. By raising awareness of rare diseases, they hope to foster greater compassion for the families whose lives often look different from what others see on the surface. 

Eva’s story is not one defined by limitations, but by love.

It is a story of a family who chose hope in the face of the unknown, who learnt to treasure the moments many of us don’t think twice about, and who continue to celebrate every little victory, every smile, and every day they are blessed to share together.

For them, the greatest gift has never been certainty about tomorrow. It has always been Eva.