Against all odds, Luloyamo Madzinye, who was born with the rare genetic disorder Edwards syndrome (Trisomy 18), celebrated her ninth birthday at Stepping Stone Hospice on July 22.

Luloyamo’s mother, Fikile Madzinye, shared her emotional journey during the celebration, describing the challenges of raising her daughter as a single parent after she was rejected by her biological father before birth.

Born with Edwards syndrome, Luloyamo had an underdeveloped brain, two holes in her heart and developmental disabilities. Doctors said children with the condition rarely live beyond their first birthday.

Although the holes in her heart closed without surgery and she later underwent a successful tonsillectomy and surgery to remove an abscess near her brain, she continued suffering frequent seizures that resulted in repeated intensive care admissions.

Madzinye said years of caring for her daughter while working full-time eventually led to caregiver burnout.

“I didn’t know that I was not coping,” she said.

After Luloyamo spent 30 days in ICU in 2024, Madzinye herself was admitted to a psychiatric facility, where she received treatment and therapy.

During her admission, doctors recommended transferring Luloyamo to Stepping Stone Hospice, a decision her mother initially struggled to accept.

“I asked myself what kind of a mother I was, signing my daughter up to a place I had never even seen,” she recalled.

Those fears disappeared when she saw the care her daughter received.

“The way I was received made me feel comfortable. I had no fear anymore.”

Since arriving at the Hospice in November 2024, Luloyamo has not suffered another seizure and has reached milestones her family never thought possible, including sitting independently, recognising familiar voices, and smiling and laughing more often.

Madzinye said knowing her daughter receives round-the-clock care has allowed her to rebuild her own life.

“I found myself again. I started going to the gym, visiting family and doing the things I loved because I know Luloyamo is being cared for 24 hours a day.”

“We worry so much about tomorrow that we forget to create memories today.”

Stepping Stone Hospice marked Luloyamo’s birthday with a special celebration and thanked Rika, Antoinette, Gemini Creations owner Donné Celliers and her husband for making the day memorable.

Madzinye hopes their story will encourage other families caring for children with complex medical conditions.

“As much as one day we may have to face reality, create memories that will last a lifetime,” she said.