Family of Exeter boy, Alfie, launches appeal to find a lifesaving stem cell donor with a similar British Chinese heritage
The family of a schoolboy are making a desperate appeal for more people with Chinese and mixed ethnicity to join the Anthony Nolan stem cell register to help save their eight-year-old son, Alfie Pinckney, after he was diagnosed with severe bone marrow failure.
Maths whizz Alfie, a “gregarious and witty” child was born to Chinese-British nationals Lily, 45, and Charles, 44. He loves playing with twin sisters, Sienna and Willow, 5, getting his kicks from winding them up, in typical older brother fashion.
In March 2020, Alfie was diagnosed with aplastic anaemia, a rare and serious condition that occurs when your body stops producing enough new blood cells. Alfie depends on weekly blood and platelet transfusions to keep him alive, and doctors have said his only hope of a much-needed cure is a stem cell transplant from a matching donor.
In the UK, between 100 and 150 people are diagnosed with aplastic anaemia each year*. Unfortunately, no-one in Alfie’s family, including his sisters, are a stem cell match, so the family are relying on a life-saving stranger to help save his life. His dad, Charles, who gave up his job as a property investment manager to look after Alfie full-time, says:
‘It’s every parent’s worst nightmare finding out that this child has a life-threatening condition.Our world turned upside down. Alfie has just accepted weekly infusions are part of his life now.
‘We knew a stem cell transplant was a possible treatment, but it was devastating news none the less. As a family, we’re having these conversations that you shouldn’t have to have.’
In even more difficult news, Alfie’s parents were told that there was no matching stem cell donor. The family are aware that Alfie’s search is made harder by fact he is of mixed heritage and is unlikely to find a donor with a similar ethnicity to himself. Only 71% of transplant recipients receive the best match from a stranger, which drops dramatically to around 37% of patients from minority ethnic backgrounds.
In 2018, his parents noticed something was wrong. Alfie exhibited some worrying symptoms such as overwhelming lethargy. He would come home from school and go straight to sleep and suffered with high fevers. In March 2020, Alfie’s health took a frightening turn as he had a severe haemorrhage before being diagnosed with aplastic anaemia
Driven by his son’s treatment and his family’s experience, Charles is throwing everything at raising awareness of the urgent need to diversify the stem cell register and get a match for Alfie. He says:
‘We’re trying to raise awareness of the need for more people, especially if they have Chinese or mixed heritage to join the Anthony Nolan stem cell register. It’s a swab of the cheek and you’re on it. Alfie knows we need to find his lifesaver and we have hope we will. This is the reality of it. It’s a brutal reality, but it’s reality.’
It is easy to join Anthony Nolan’s stem cell register. People can request a swab pack online which is delivered through the post. The potential donor swabs their cheek and sends this back to Anthony Nolan. The charity will only ask someone to donate their stem cells if they come up as a match for someone who needs them, such as Alfie.
Henny Braund MBE, Chief Executive of Anthony Nolan, says:
‘Finding his matching donor would mean the world to Alfie and his family. We’re doing all we can to support the Pinckneys and find a stem cell donor to give Alfie a second chance of life.
‘Alfie shouldn’t be at a disadvantage because of his ethnicity, but the statistics speak for themselves. If you’re aged 16-30 and in good health, you could be a lifesaver for someone like Alfie. Together we can ensure that Alfies of the future won’t need to publicly appeal, and there will be a matching donor for everyone who needs one.’
Please visit www.anthonynolan.org/alfie to join the register.
*The Aplastic Anaemia Trust