Ruth Wambui, mother of late internet sensation Neilah Zuri, has appealed to well-wishers to help honour her daughter with a dignified farewell.
Neilah, who lived with Spinal Muscular Atrophy (SMA), passed away on February 15, just a day after celebrating her eighth birthday.
On Instagram, Ruth wrote, “Help me honour my baby one last time. Let’s give her the most beautiful and dignified send-off through your love and support. Every prayer, every share, and every contribution means so much to us.”
Neilah’s battle with SMA, an inherited neuromuscular disorder, had been widely shared by her mother, who built a following advocating for critical SMA treatments.
The condition causes progressive muscle weakness and wasting, affecting movement, breathing, and swallowing, and often leads to complications such as scoliosis, respiratory infections, and joint contractures.
SMA results from mutations in the SMN1 gene, reducing the production of the survival motor neuron (SMN) protein essential for motor neuron health.
Without this protein, motor neurons deteriorate, impairing signals to muscles and causing progressive weakness. The disease is inherited in an autosomal recessive pattern, meaning both parents must carry the mutated gene.
Ruth previously shared that managing the condition required expensive medications. They initially administered Spinraza, which costs about Sh17 million per year, before Neilah was placed on a compassionate access program for Risdiplam, a daily medication provided at no cost.
Neilah’s courage and Ruth’s dedication won them admiration from netizens.
Social media has been flooded with condolences and support following her passing.
@Nyaminde said, “Oh nooo! I was so touched by her smile as they sang happy birthday to her. This is such sad news. Pole sana, Ruth.”
@Carolinacarlz added, “Doctors gave 11 months, with God, with your unconditional love, care and support, she got 7 more years. You are an amazing mum. May God bless you.”