8 July 2020
The family of a toddler are racing against the clock to find a blood stem cell donor who could save their daughter’s life, as she battles a rare and aggressive type of leukaemia.
Liya Gumusoz, who is 21 months old, was diagnosed with acute myeloid leukaemia (AML), a condition which affects around one in 3,100 people, back in February. Doctors have now told the family that Liya must have a bone marrow transplant by the end of July if she is to beat the disease.
However, there is currently nobody on the worldwide register who is a close enough genetic match to Liya, leaving her life hanging in the balance.
Liya’s parents Ufuk and Hatice, who are originally from Turkey but now live in London, first noticed something was wrong at the start of the year, when Liya was getting tired more easily and losing her appetite, along with unusual bruising on her body. When Liya began to have difficulty walking, her parents knew something was not right.
After several false starts with medical professionals believing she was healthy, Liya’s condition took a significant turn for the worse. The couple woke on a Sunday morning to Liya screaming in pain so immediately rushed her to hospital, knowing something was seriously wrong.
Hatice said: “We waited for hours in the hospital for the results, and finally a doctor told us they wanted to keep Liya in overnight for further tests. We were concerned about coronavirus, so did not want to stay in the hospital. But the doctor said that if Liya were her daughter, she would stay. I just knew then that something was very wrong.”
Liya was transferred to Great Ormond Street Hospital where she underwent a series of tests - a test for COVID-19, alongside MRI scans, bone marrow aspirations and painful lumbar punctures. As the pandemic took hold, only one parent was allowed to see Liya, and they could not rotate.
Over the next few days, the worried couple - now divided by the pandemic - faced a terrible wait for news on their daughter’s condition. Finally a hematologist sat down with Hatice and asked that she call her husband and ask him to come immediately. They broke the devastating news: Liya has leukaemia.
Recalling the moment she heard the news, Hatice said: “I couldn’t breathe. I felt like my heart had been stabbed over and over again. I just sobbed. All I wanted to do was leave the room and go and cuddle my baby.”
Liya began chemotherapy the next day, but it’s not enough to beat her leukaemia. She needs a blood stem cell transplant from her ‘genetic twin’. Someone, somewhere in the world with the same genetic makeup as her, can donate their blood stem cells in a procedure similar to giving blood.
Because of the urgency of Liya’s situation, she must receive a blood stem cell transplant by the end of July.
The family, along with DKMS, are making an urgent appeal for more people to come forward and register as a potential blood stem cell donor, to give Liya a second chance at life.
To people across the UK who have not yet signed up as a potential blood stem cell donor, Hatice is making an emotional plea: “The only way we can keep our baby with us is you. We are so devastated, and are asking everyone to help our daughter become a happy, healthy girl again”.