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Family of seven-year-old with leukaemia call for more lifesaving stem cell donors

The family of a seven-year-old girl with leukaemia, who is also recovering from Coronavirus, are calling for more people to sign up as potential stem cell donors, with blood cancer charity Anthony Nolan. They have been told that there is currently no one on the stem cell donor register who is a perfect match for their daughter.

Sophie, who is seven-years-old and from Northampton, was diagnosed with acute lymphoblastic leukaemia, a type of blood cancer, in June 2017 when she was just four-years-old. She completed her chemotherapy treatment in October last year.  However, just three months later, her family received the devastating news that Sophie’s cancer had not only returned but had now spread to her central nervous system, affecting her vision and mobility. Sophie now needs a stem cell transplant if she is to be cured.

Prior to her original diagnosis in 2017, Sophie had various symptoms including persistent infections, pale skin and a general lack of energy.  However, with her relapse her main symptoms were a decline in her mobility, resulting in her finding walking increasingly difficult as well as and problems with her eyes.

Emily, Sophie’s mum, said: ‘We took her to hospital one weekend as she didn’t seem well in general and the relapse was picked up through a blood test. A few days later she started treatment and doctors started talking about a stem cell transplant.’

To add to the family’s already difficult situation, following the return of Sophie’s leukaemia, she also caught Coronavirus.  The virus, combined with the treatment Sophie was receiving to fight her leukaemia, made Sophie seriously ill and she had to be placed in an induced coma in intensive care.

Emily said: ‘Within a few days of starting a new treatment for leukaemia Sophie started to experience a fever and her breathing started to deteriorate.  After six days of the new treatment, her breathing had deteriorated so much that she had to be ventilated and put into an induced coma. The doctors think that Sophie's condition is likely to have been due to the combined effects of coronavirus and the drug being used to treat her leukaemia.

‘Thankfully on day eight, the doctors began to wake Sophie and they were able to remove her ventilator.

‘It is now over five weeks since Sophie woke up from the induced coma and the recovery process is extremely slow and tough on her. To start with she couldn’t walk and hardly spoke but she can now walk short distances using a frame and her speech has improved a lot.’

Sophie is currently going through a rehabilitation phase so that she can recover from the induced coma. She will need to complete this recovery phase to put her in a position to receive a stem cell transplant.

Emily said: ‘We are all very concerned and worried. The treatment makes Sophie feel very unwell and she also misses her friends and family a lot.’

Sophie’s younger sister is unfortunately not a stem cell match for her sister. Anthony Nolan have searched their register for the special stranger who could give Sophie a second chance of life, however there is currently no perfect match.

Sophie’s ethnicity makes finding that match more difficult.  Transplant recipients have a 69% chance of receiving the best possible match, however this drops dramatically to around 20% if you're from a Black, Asian or ethnic minority background.

Sophie’s dad, Colin said: ‘Because Sophie is mixed race, we did suspect that there wouldn’t be a perfect match for her.  Sophie has found a 9/10 match, which isn’t ideal but is potentially good enough to proceed with transplant, however a 10/10 would give her the best chance.

‘It’s so simple and easy to take the first step in joining the register, it’s just a cheek swab. You could save a person’s life, not in an indirect way, but by actually being the most important contributor in saving someone’s life. That is something that most people never have the chance to do.’

Rebecca Pritchard, who leads the Register Development team at Anthony Nolan said: ‘We are doing everything we can to support Sophie’s family and their search for a donor, during this difficult time.

‘Every single person who signs up to the register has the potential to give hope to someone who is in desperate need of a lifesaving stem cell transplant. We’ll send swabs kits in the post which we’d ask to be sent back to us safely, when people are taking their exercise or shopping for food.

‘We’re particularly calling on people from East Asian, and other minority ethnic backgrounds to consider joining the register, as well as young men aged 16–30. Young men provide more than 50% of all stem cell donations but make up just 18% of our register. Together, we can work towards a future where nobody is waiting for their match.’

Anthony Nolan recruits people aged 16–30 to the stem cell register as research has shown younger people are more likely to be chosen to donate.

They also carry out ground-breaking research to save more lives and provide information and support to patients after a stem cell transplant, through its clinical nurse specialists and psychologists, who help guide patients through their recovery.

It costs £40 to recruit each potential donor to the register, so Anthony Nolan relies on financial support. Due to an increase in costs, Anthony Nolan needs to raise extra funds for every month that the coronavirus pandemic continues

To find about more about joining the Anthony Nolan register, or to find out more about the different ways you can support, please visit www.anthonynolan.org/match4sophie

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