Another rare condition stalks baby Arianna who conquered death scare

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

The baby has been diagnosed with Pearson Syndrome (PS), which is caused by a problem within the DNA, according to doctors at Fortis Memorial Research Institute in India where she has been undergoing treatment. PS is an extremely rare condition with less than 10 known cases globally, the medics said.

“This is the first case we have encountered and there is no prior history of a bone marrow transplant for Pearson Syndrome patients in India. It’s possible that this is the first case to be handled in the country, as the few others might have been treated elsewhere,” Dr Vikas Dua, the lead doctor handling the case, told Nation in an interview.

Dr Dua further disclosed that they have notified relevant authorities and are organising a major press event to show the world the first successful PS transplant case handled in India.

Baby Arianna has, however, used up the Sh6 million Kenyans contributed to her medical kitty.

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

Two months ago, Fortis doctors told Nation that, without proper follow-up, Arianna was at a high risk of getting infections or her body rejecting the new stem cells. On Sunday, the hospital explained that, while most DNA is contained in the centre of the body’s cells, there is a small portion of DNA contained in another part of the cell called the mitochondria. This section of DNA makes energy by combining oxygen with the sugars and fats from food sources. PS is usually caused by missing pieces — called deletions — of a part of the mitochondrial DNA. Changes in mitochondrial DNA make it hard for the cell to make energy.

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

 Arianna is now battling a rare condition that affects various parts of the body in particular the bone marrow and the 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 medical condition and the generosity of Kenyans who she said have been coming through for them in huge numbers.

“Dear Kenyans I have been told for the next one month we need to pay Sh100,000 on a weekly basis which I do not have. Your support can make a significant difference in Arianna's journey to recovery,” she said.

You can channel your support through:

- Paybill: 522533

- Account: 7834867 (Arianna's Medical Fund)

- Mpesa number: 254720677064 (Teresa Ndung'u - Mother)

[email protected]