The mother of one of the youngest sickle cell patients to rely on donated blood has made a desperate appeal for more Black donors to save her little girl.
Seventeen-month-old Suki needs regular blood transfusions to stay alive, but a shortage in Black blood donors means it’s hard to find ethnically matched blood for the toddler.
Suki has sickle cell disorder, an inherited blood disorder that is more common in Black people. It can cause organ failure, stroke or loss of vision, and it can be fatal.
Her mum, Layla Lawson is pleading for more Black people to donate their blood in order to help the many children who are in Suki’s situation.
‘By the time she was nine months old Suki had already suffered two terrifying sickle cell crises,’ says Layla, who is from north London.
‘One of the times it was in her spleen. By the time we got to the hospital she could barely sit up. She was too pale. The doctors needed to get blood into her quickly to save her life. I remember sitting there, just watching her breathe.
‘After the second crisis the doctors put her on monthly blood transfusions. Without them her organs could shut down. Donated blood is literally the thing that keeps us together.
‘As her veins are so tiny it can be near impossible to get the IV line in. But once she has that good blood in her system, she’s a different child. After 20 minutes the colour is returning to her face and she wants to be off the bed and running around.’
It is estimated that fewer than one in 10 of the 4,000 children and young people with sickle cell in England are on the transfusion programme, making Suki one of the youngest to depend on life-saving blood donations.
Many adults rely on frequent transfusions to reduce the risks from sickle cell, but children are typically able to manage the disorder with medication. They are more likely to need blood for treatment as they become older, as the risk of serious and life-threatening complications increases with age.
Black people are more likely to have the rare blood subtype that many Black sickle cell patients need, but there is an urgent shortage of Black donors.
This makes it harder to find the best matched blood for Black people, putting them at greater risk of potentially life-threatening transfusion reactions.
‘Although I carry the sickle cell trait, before Suki I had no idea of the importance of ethnically matched blood for sickle cell patients,’ explains Layla.
‘Every day is a worry when you have a child with sickle cell. If more Black people gave blood, I would have less worry about transfusions exposing Suki to other complications.
‘To people from a Black background I just want to say – please, donate blood. You will help secure the future of children and adults with sickle cell who depend on blood – you will save lives.
‘Suki has tough times with her sickle cell and it’s terrible to watch your child in pain. But the rest of the time she’s just a normal, happy little girl who loves Peppa Pig. That is all thanks to blood donors, and I can’t put into words how thankful I am to everyone who donates.’
Sickle cell affects the red blood cells that carry oxygen around the body. These cells form into a sickle or crescent shape and can block blood vessels, causing agonising pain and creating a risk of life-threatening complications. This is known as a sickle cell crisis.
Many of the 14,000 sickle cell patients in England need regular blood transfusions or exchanges to help prevent or relieve the painful symptoms and complications. Others rely on blood for emergency treatment if they experience a crisis.
Without matching blood, patients risk complications caused by their transfusions and currently sickle cell patients are the most vulnerable to this due to the shortage of Black donors.
Layla works as an engagement officer with the Sickle Cell Society. She joined the charity soon after Suki was born to help raise awareness of the disorder and she works with young people and in schools.
While the number of Black blood donors has grown steadily in recent years, the urgent shortage remains. There are currently 12,633 Black and mixed Black donors, which is around 1.5 percent of the donor base.
‘More and more Black people are saving lives by donating blood. But the NHS urgently needs more black donors so patients like Suki can receive the best matched blood possible,’ says Nadine Eaton, head of blood donor recruitment for NHS Blood and Transplant.
‘Blood donation is quick, easy and safe. We urge people of Black heritage to do something amazing and register as donors. You will save lives.’
Since the Covid-19 outbreak, extra safety measures have been introduced across all blood donation sessions. On arrival donors have their temperature taken and are triaged to ensure only those with no risk factors can enter.
Hand gels and hand washing facilities are available inside donation venues, donors are spaced apart and staff are doing extra cleaning. Staff and donors are required to wear face coverings.
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