"The only way to keep our baby with us, is you" - Emotional plea from Mum of baby in urgent search for lifesaver

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 18 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.

Loss of appetite

Liya’s parents Ufuk and Hatice, who 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, so they took Liya to the GP, who initially did not believe there was anything wrong.

Mum Hatice said: “We were told she was a perfectly healthy little girl, and perhaps her walking strangely was Liya copying something she might have seen.”

“Two weeks later, she wasn’t able to move at all, and was crying out in pain. We called 111, who sent an ambulance which arrived eight hours later. By then, Liya was sleeping, but after examining her the paramedics were still not concerned.”

However, because of her young age, Hatice and Ufuk were advised to take Liya to A&E, where again the doctors believed she was healthy, and she was discharged.

But a week later, Liya’s condition took a significant turn for the worse. The couple woke on a Sunday morning to Liya screaming in pain. Hatice and Ufuk immediately rushed Liya to hospital, knowing something was seriously wrong. Liya was examined by multiple doctors, and was given an X-ray and blood tests.

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.”

Transferred to Great Ormond Street Hospital

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.”

Doctors recommended Liya began chemotherapy the next day. However, for Liya, and many other people in her position, chemotherapy is 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, who 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. In the absence of a perfect match, doctors are planning to move ahead with her dad Ufuk as the donor – however he is only a 50% match, which is much less than ideally required.

Urgent appeal for a donor

The family, along with DKMS, a blood cancer charity dedicated to the fight against blood cancer, 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.

In the UK, 2000 people per year are searching for their potential blood stem cell donor, but with only 2% of the UK’s population on the register, and the number of new people signing up as potential donors drastically falling in the wake of the coronavirus pandemic, people like Liya and her family are facing an uncertain future.

Jonathan Pearce, CEO of DKMS UK said: “We are hugely concerned about the impact COVID-19 is having on those who rely on a blood stem cell donor to save their lives, and over the last weeks and months, we have seen a drastic fall in the numbers of people joining the blood stem cell register.”

“I am appealing to people for come forward and join the blood stem cell register to help Liya, and the many people like her fighting different types of blood cancer. We can all do this from home, without breaking the rules on social distancing. You can give hope at a time when it is so needed.”

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”.

How you can help

If you are aged between 17 and 55 and in general good health take the first step to register as a blood stem cell donor by registering for your home swab kit at www.dkms.org.uk/liya. It costs us £40 to register just one potential blood stem cell donor. While many of our supporters contribute towards the cost of their registration, not all are able to do so. Any funds you can donate, no matter the size, can make a huge difference and help to give blood cancer patients a second chance of life.