The family of a one-year-old with leukaemia are calling for more people to sign up as potential stem cell donors, with blood cancer charity Anthony Nolan, after being told that there is currently no one on the stem cell donor register who is a perfect match for their little boy.
Alfie Webb, from Ely in Cambridgeshire was diagnosed with acute myeloid leukaemia, a type of blood cancer, in October 2018, when he was 10 months old. He has recently finished chemotherapy treatment, but his family have been told that a stem cell transplant may be needed to cure his cancer and stop it returning.
In October last year, Alfie developed sickness and a high temperature after several days of being ill. His mum Saffron’s instinct told her something wasn’t quite right and she decided to call ambulance, which took Alfie straight to Addenbrooke’s Hospital.
Doctors initially thought Alfie might have meningitis, however his family were then given the devastating news that they suspected he had leukaemia. Further tests confirmed a diagnosis of acute myeloid leukaemia, which usually affects people over the age of sixty. The diagnosis couldn’t have come at a worse time for the family, as Alfie’s dad Ollie had just finished treatment for Hodgkin’s lymphoma, also a type of blood cancer, on the day Alfie first became unwell.
Alfie’s mum, Saffron, 24, said: ‘To be told that Alfie had leukaemia was a massive shock and completely devastating for us. Alfie’s dad Ollie had just finished treatment for cancer and hadn’t yet had the all clear, so at that point I didn’t know if either of them would be okay.’
Alfie started chemotherapy a few days after his diagnosis and remained in hospital for six months, where he had four cycles of chemotherapy and frequent platelet and blood transfusions. He was allowed home for four hours on first birthday, however the celebration was small as due to his weakened immune system and increased risk of infection, he was only allowed to be around a small number of people.
Saffron said: ‘He caught various infections and viruses in hospital, which sometimes resulted in us having to stay in a barrier room. This was a room away from other patients, with no windows, so it felt like being at the bottom of a boat.’
‘We even spent Christmas day in a barrier room. We dressed up as elves as we wanted to make it fun, but it really wasn’t the best first Christmas for Alfie.’
Now that he has finished his chemotherapy treatment he has been allowed back home, however his family have been told that a stem cell transplant may be needed to cure his cancer.
Saffron said: ‘At hospital he would be crying at the door because he wanted to go outside. When he was having chemo he couldn’t move as he was hooked up to the machine but all he wanted to do was crawl around, so being back home is amazing, he just loves being at home. When I take him into his bedroom he keeps saying ‘wow!’.
‘However, we’re not back to normal. He still has his hickman line in case he needs a transplant, this restricts his movement and he still can’t be around too many people. It’s all up in the air at the moment and we’re just waiting, which is really hard.’
Anthony Nolan have searched the stem cell register for a special stranger who could save Alfie’s life, but a perfect match hasn’t been found. His family are taking this opportunity to campaign for more people to come forward and join the Anthony Nolan register, to help other people in the same situation as Alfie.
Karen, Alfie’s grandmother, said: ‘Doctors thought there would be hundreds of people on the register who would be the best possible match for Alfie, so they were extremely shocked to find there wasn’t anyone.
‘So far I have managed to get 140 people to join the register. I’m spreading the word until I’m blue in the face. We have met other people on the ward who can’t find a match and we know how important it is. We want to help all those other people, not just Alfie, we’re always thinking about the other children that are left behind.’
Sarah Rogers, Anthony Nolan Regional Register Development Manager said: ‘We are doing everything we can to support Alfie’s family and it’s extremely heart-warming that they are thinking of other families 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’re particularly calling on young men aged 16–30 to consider joining the Anthony Nolan register as they 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.
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/hope4alfie