Baby Arianna Wairimu
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The Indian government has announced that Baby Arianna Wairimu, a 14-month-old infant from Kenya, will return home on Wednesday after nearly a year in New Delhi’s Fortis Memorial Hospital.
She underwent a high-risk stem cell transplant to treat Pearson Syndrome, a rare and potentially fatal condition that affects various bodily systems, particularly the bone marrow and pancreas. This procedure represents India's first successful haploidentical bone marrow transplant and the seventh recorded globally. Haploidentical transplants utilize the healthy blood-forming cells from a donor to replace the patient's unhealthy cells.
In this case, Arianna's mother, Teresa Ndung’u, served as the donor. The Indian government facilitated the family's accommodation and return trip costs, while treatment expenses were largely covered through contributions from well-wishers, family, and friends. The successful outcome of Arianna's treatment was celebrated during the Sanjeevani 2024 Healthcare and Wellness Expo, marking a significant medical milestone.
Fortis Memorial Research Institute in Gurugram was instrumental in treating Arianna, who was diagnosed with Pearson Syndrome, a condition that occurs in approximately one in a million births; only 150 cases have been documented in the medical literature. The transplant involved a carefully designed chemotherapy regimen, and Arianna was discharged in stable condition just 21 days post-procedure. Since then, she has been participating in weekly outpatient follow-ups.
In an effort to broaden the impact of her case, Baby Arianna is set to take part in an upcoming global study initiated by the Indian government aimed at assisting similar patients worldwide. Additionally, she has been appointed as the Pearson Syndrome ambassador for the healthcare facility that provided her treatment. Dr. Vikas Dua, Head of Pediatric Hematology at Fortis, highlights the grave prognosis for children with Pearson Syndrome, stating that many do not survive beyond their first year.
Previous reports from Medical Services Principal Secretary Harry Kimtai indicated that Baby Arianna was eligible for Sh500,000 in assistance. However, her treatment was complicated by a significant debt owed by the now-defunct National Hospital Insurance Fund (NHIF) to Fortis Memorial, which undermined the guarantee of payment (GOP). Despite Ms Ndung’u’s decade-long contributions to the NHIF, the promised financial support fell through due to unresolved GOP issues.
She notes a lack of communication and follow-through from health officials, further complicating the situation. Despite these challenges, the family successfully raised Sh8 million for Arianna’s treatment, thanks to the generosity of friends, family, and the Kenyan community. Ms Ndung’u expresses her deep gratitude for the support received, emphasizing that they have made progress because of the goodwill of fellow Kenyans.
She hopes that Arianna’s case will inform future research to assist others facing similar health challenges, despite the ongoing financial strain on her family.