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Ruth Wambui, the mother of late online star Neilah Zuri, has appealed to friends, fans and well-wishers for support as she prepares to give her daughter a dignified sendoff.
Neilah, who was living with Spinal Muscular Atrophy (SMA), died on February 15, a day after marking her eighth birthday.
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In an emotional Instagram message, Ruth asked for prayers, shares and contributions to help her honour her daughter with a beautiful farewell, saying every form of support would mean a great deal to the family.
Over the years, Ruth openly documented Neilah’s journey with SMA, an inherited neuromuscular condition, building a strong online community while advocating for access to life-saving treatment.
SMA leads to progressive muscle weakness and wasting, interfering with movement, breathing and swallowing, and can result in complications such as scoliosis, recurring respiratory infections and joint stiffness.
The disorder is caused by mutations in the SMN1 gene, which reduce production of the survival motor neuron (SMN) protein necessary for healthy motor neurons. Without sufficient SMN protein, motor neurons gradually degenerate, weakening communication between nerves and muscles. The condition is inherited in an autosomal recessive pattern, meaning both parents must carry the faulty gene.
Ruth had previously disclosed the high cost of managing the illness. The family initially relied on Spinraza, a treatment costing about Sh17 million annually, before Neilah was enrolled in a compassionate access programme that provided Risdiplam, a daily medication, free of charge.
Neilah’s resilience and her mother’s unwavering commitment earned them widespread admiration online.
Following news of her passing, social media has been filled with heartfelt condolences, with many praising Ruth’s strength and celebrating the extra years Neilah lived beyond doctors’ early projections.
