Another rare disease affects baby Arianna, who has overcome fear of death

Baby Arianna, the one-year-old Kenyan toddler who had a successful high-risk stem cell transplant on July 5, has tested positive for another very rare and deadly disease.

The baby has been diagnosed with Pearson syndrome (PS), which is caused by a problem within the DNA, according to doctors at the Fortis Memorial Research Institute in India, where he has undergone treatment. PS is an extremely rare disease with fewer than ten known cases worldwide, doctors said.

“This is the first case we have come across and there is no history of bone marrow transplant for patients with Pearson syndrome in India. “It is possible that this is the first case to be treated in the country as the few others may have been treated elsewhere,” said Dr. Vikas Dua, the senior doctor handling the case, in an interview with Nation.

Dr. Dua further revealed that they have notified the relevant authorities and are organizing a grand press event to show the world the first successful PS transplant case in India.

However, baby Arianna has used up the Sh6 million that Kenyans donated to her health fund.

The transition to a new healthcare system in Kenya has also impacted the baby’s treatment. This is because the hospital declined to accept the National Hospital Insurance Fund (NHIF) card due to concerns over the transition to the Social Health Authority (SHA) and Social Health Insurance Fund (SHIF).

Two months ago, Fortis doctors said nation that without proper follow-up care, Arianna was at high risk of getting infections or her body rejecting the new stem cells. On Sunday, the hospital said that while most DNA is located in the center of the body’s cells, a small portion of DNA is contained in another part of the cell, the mitochondria. This section of DNA creates energy by combining oxygen with the sugars and fats from food sources. PS is usually caused by missing parts – called deletions – of part of the mitochondrial DNA. Changes in mitochondrial DNA make it more difficult for the cell to generate energy.

The doctor and his team have been conducting DNA tests on the baby for several months to check how the donor cells function in the patient’s body.

Arianna is currently battling a rare condition that affects various parts of her body, particularly the bone marrow and pancreas. PS also affects the cells in the bone marrow that produce white blood cells, red blood cells, platelets and hematopoietic stem cells.

Ms Ndung’u thanked the Nation Media Group (NMG) for its coverage of baby Arianna’s health and the generosity of Kenyans who she said had come out in large numbers to help her.

“Dear Kenyans, I was told that we have to pay Sh100,000 weekly for the next month which I don’t have. Your support can make a big difference in Arianna’s journey to recovery,” she said.

You can channel your support through:

– Account: 7834867 (Arianna’s Medical Fund)

– Mpesa number: 254720677064 (Teresa Ndung’u – mother)