Riya went from never having a blood test to needing a blood transfusion every other day.

The then 11-year-old was diagnosed with aplastic anaemia, a rare and serious blood disorder where the body stops producing enough new blood cells.

Aplastic anaemia develops as a result of bone marrow damage. Without adequate numbers of blood cells those with the condition can become anaemic and more susceptible to infections, bleeding and bruising.

Riya’s family, including parents Sonali and Gaurav Mahajan, were in India at the time when she started to feel fatigued, rapidly lost weight and developed bruises on her thighs.

Image: Sonali with her daughter Riya, who was diagnosed with aplastic anaemia, a rare and serious blood disorder.

“We took Riya for a simple blood test, her very first one. But as soon as the results came in, we were told to rush her to the emergency department due to her being so low on platelets and red blood cells,” Sonali said.

“Riya was originally diagnosed with leukemia because the symptoms are very similar to aplastic anaemia. When we got the eventual diagnosis, it was a complete shock and a condition we had never heard of before.

“The doctors told us she had bone marrow failure and she started needing regular platelet and blood transfusions to get her blood cell count up.”

Sonali said the family had already planned to return to Australia for Riya’s high school education, but the diagnosis fast tracked the return.

“Once they were able to stabilise her, we were given a two-day window to fly her to Australia to be hospitalised,” she said.

“As soon as we got off the plane we went straight to The Royal Children’s Hospital. Within days Riya started therapy, but she never really responded to the medications.

“Eventually a bone marrow transplant was recommended due to the amount of transfusions she was needing to have and the concerns around possible long-term complications.”

Sonali said over six months they struggled to find a perfectly matched donor and were losing hope.

Image: Riya at MCRI.

“You hear all these stories about how people are waiting years for a donor,” she said. It caused us a huge amount of anxiety and was traumatic to see Riya struggle so much.

“Despite being a half match, the specialist decided I would be her donor.”

Following the bone marrow transplant in June last year, Riya remained in hospital for three months where she had minor complications.

Without a perfect donor match, Riya’s platelet count took more time to return to normal, she required longer immunosuppressive therapy and was more susceptible to infections. Riya only recently started to be re-vaccinated.

“She had a weakened immune system for a long time after the transplant but thankfully once she was discharged from the hospital she hasn’t needed another transplant,” Sonali said.

Image: Riya with father Gaurav, who said the new MCRI research would be a great boon for children with blood disorders.

Riya, 14, said after a painful few years she was now feeling well, took hydrotherapy classes and was glad to be back at school with her friends.

Sonali said the new Murdoch Children’s Research Institute (MCRI) led research that created blood stem cells in the lab which closely resemble those in the human body was a significant achievement.

“This research will come as a blessing to so many families,” she said. The fact that one day there could be targeted treatments for children with leukaemia and bone marrow failure disorders is life changing.”

Gaurav said; “We are truly grateful for the care and treatment provided by The Royal Children’s Hospital and the research undertaken by MCRI."

“We could not have asked for better care for our daughter and feel that the new research being done by MCRI will be a great boon for children suffering from similar conditions as Riya in the future.”

Image: Gaurav with Riya and MCRI Professor Ed Stanley in the stem cell medicine lab.