Mirriam and her little brother hug before the operation at the Methodist Children’s Hospital in San Antonio, Texas, USA

By Anthony Bugembe

SEVEN-YEAR-OLD Mirriam Mulumba is the first Ugandan to be cured of sickle cell disease using the bone marrow and stem cell transplant.

She is the daughter of Capt. Lukiah Mulumba, a Ugandan-American serving in the US airforce.

The operation was carried out on October 29-30 in the US at the cost of $250,000 (about sh500m) paid for by the airforce.

The treatment involves destroying the infected bone marrow through chemotherapy and replacing it with healthy marrow.

Mirriam’s replacement marrow was donated by her little brother, Abudallah Mulumba.

Two tests have indicated that Mirriam is free of the disease but she has to stay in the house and study at home to avoid other infections because her immunity is still weak.

“Mirriam is also not allowed to fly long distances for at least two years,” said Ruth Nankanja, the chairperson of the Sickle Cell Association of Uganda. “That is when her immune system will have grown stronger,” she added.

Such an operation, said Nankanja, costs 150,000 pound sterling (sh450m) but about $30,000 (sh60m) in India. “Originally sickle cell disease was looked at as incurable. The successful treatment of Mirriam has shown us that it can be cured,” Nankanja said. “We believe, the operation will one day be available in Uganda at an affordable cost.”

Her association, which is housed in a container (make-shift accommodation) in Mulago Hospital, wants to put up a modern centre. The container was donated by Transami.

The sickle cells home, Nankanja said, would cost about sh5b and the construction would commence in June.

She said at the moment, sickle cell patients are admitted in the general ward where they are handled by paediatricians.

“We don’t have trained medical personnel to handle them in Uganda,” she said.

About 25,000 babies with sickle cell disease are born annually in Uganda. Of these, nearly 80% die before reaching five.

The oldest person living with the disease in Uganda, according to Nankanja, passed away in June at the age of 80.

“With proper management, most of the deaths can be avoided. In Uganda, all new-born babies are not screened until they begin showing symptoms which is about three to six months after birth,” said Nankanja.