Emily-Grace Jelley was born on December 11 2024. She was diagnosed with Congenital Cytomegalovirus (CMV) just days after she was born and has faced numerous medical challenges.

Despite ongoing treatment, therapy and specialist care, her family continues to celebrate every milestone while reaching out for support with hope and humility, to help give Emily-Grace the best possible future.

Emily-Grace was admitted to the Neonatal Intensive Care Unit (NICU) at three days old, where she spent almost three weeks receiving lifesaving treatment.

During her stay, she required breathing support, tube feeding, antiviral medication and underwent numerous medical investigations. However, this was only the beginning of her journey.

Doctors later discovered that CMV had caused damage to her developing brain, including bilateral ventricular bleeds and injury to the occipital region.

She also suffered a hypoxic-ischemic brain injury, further affecting her neurological development.

Ongoing medical challenges

Emily-Grace has since been diagnosed with:

• Bilateral hearing loss

• Auditory neuropathy

• Cortical vision impairment

• Cerebral palsy

• Microcephaly

• Global developmental delay

• Neurological delays caused by Congenital CMV and brain injury

Although the list of diagnoses is extensive, her family says she continues to show incredible determination every day.

A long road of treatment

Emily-Grace received a hearing aid for her right ear when she was just seven weeks old.

She underwent cochlear implant surgery on her left ear this year on March 30, with the device activated on April 30. She continues to attend mapping sessions and regular hearing assessments, while specialists monitor the hearing in her right ear, which continues to deteriorate, and may require a second cochlear implant in future.

Every week she attends speech therapy, occupational therapy and physiotherapy. She also has regular appointments with her audiologists, ENT specialist, paediatrician, ophthalmologist and other healthcare professionals.

Every milestone is a victory

Emily-Grace faces feeding challenges and is unable to chew solid food. Her meals must be blended into smooth textures to prevent choking.

The effects of CMV also damaged the cell formation, development, and maturation of her teeth, leaving weakened enamel that requires careful daily oral care and a strict sugar-free diet.

As she grows, her care team and family are exploring whether she may need a specialised paediatric buggy to support her mobility.

Despite everything Emily-Grace has endured, every new sound she hears, every movement she learns and every developmental achievement is celebrated as a major milestone.

Faith remains their strength

Emily-Grace’s father and mother, Byron and Kayla Jelley, said their faith has carried the family through every challenge.

“Sometimes this journey feels overwhelming, but God has never left our side. He continues to strengthen us, provide for us and remind us that he has a beautiful purpose for Emily-Grace’s life.

Every milestone she reaches is a testimony to His faithfulness. We continue to trust him completely for Emily-Grace’s healing, growth and development while doing everything we can to give her every opportunity to thrive,” said Byron and Kayla.

Although the medical journey is ongoing, the family remains hopeful that Emily-Grace’s story will not only inspire others but also raise awareness about Congenital Cytomegalovirus and the challenges many families face.

They continue to reach out for support as Emily-Grace requires ongoing specialist care, therapy and medical treatment to give her every opportunity to reach her full potential.

Residents who wish to support can contact her mother, Kayla, on 084 597 3303