Kenyan Infant Defies Odds, Recovers from Rare Condition in India
Imagine hearing that your newborn has an incredibly rare condition, with only 150 documented cases worldwide and a survival rate that rarely extends beyond infancy. This was the harsh reality facing Baby Arianna’s parents. Born with Pearson Syndrome—a condition so rare that it affects only 1 in a million—Arianna battled severe anemia and needed constant blood and platelet transfusions just to survive. Yet today, this brave 14-month-old Kenyan infant is recovering steadily, thanks to the groundbreaking care she received at Fortis Memorial Research Institute, Gurugram.
This success is more than a milestone—it’s a first for India. Led by Dr. Vikas Dua, Principal Director and Head of Paediatric Haematology, Haemato Oncology, and Bone Marrow Transplant at Fortis Gurugram, an exceptional team crafted a personalized approach to help Arianna overcome this life-threatening disorder. After months of uncertainty, Arianna now has a brighter future, and her journey is inspiring hope for countless others.
When Arianna arrived at Fortis Gurugram, she was dangerously ill, with worsening anemia and an alarming drop in platelet levels. Despite multiple transfusions back in Kenya, her health kept declining. It was here in India that doctors diagnosed her with Pearson Syndrome, a genetic disorder that disrupts the production of blood and platelets and often brings a cascade of issues like gastrointestinal pain, developmental delays, and other organ complications. Recognizing the urgency and the rare nature of her condition, Dr. Dua and his team took a bold step—a half-matched stem cell transplant, something never before done in India for Pearson Syndrome.
“This condition is exceptionally rare and hard to treat. Kids born with it rarely survive past their first year,” explains Dr. Vikas Dua. “Arianna’s case needed not only precision and skill but also hope and resilience from her family. We’re thrilled to see her doing well and even gaining weight—a huge step forward for such a young child with this condition.”
With no full-matched donor available, the team made the courageous choice to proceed with Arianna’s mother as a half-match donor. This required a carefully tailored chemotherapy regimen and extensive supportive care. Yet, just 21 days later, Arianna was discharged, no longer dependent on constant transfusions and finally able to grow stronger without further complications.
Yash Rawat, Facility Director at Fortis Memorial Research Institute, highlights how this case underscores the power of personalized care. “Dr. Dua and his team meticulously planned every aspect of Arianna’s treatment, demonstrating the precision and dedication needed to navigate such a rare case. Our goal at Fortis is to provide world-class healthcare and, ultimately, give families a reason to hope.”
Arianna’s mother, still moved by the experience, expressed her gratitude, saying, “This transplant has given my daughter a second chance. Watching your child suffer is unimaginable, but Dr. Dua and his team at Fortis were there for us every step of the way. I’ll forever be grateful.”
Today, Arianna’s journey symbolises a new frontier in rare-disease treatment in India, proving that with the right expertise, personalized care, and a bit of hope, even the rarest conditions can be overcome. Fortis Gurugram’s success isn’t just medical; it’s a message that, even in the face of daunting odds, new possibilities are within reach.