Shaylah has a rare condition and needs regular blood transfusions, even over Christmas, to keep her alive.
The seven year old needs blood transfusions every 3 weeks to treat the painful inherited blood disorder, sickle cell disease.
She had a stem cell transplant from her mum in April but complications mean she is unwell again and currently having regular transfusions.
Shaylah says: “It makes me feel better because sometimes I get really tired and once I get my super girl blood I feel strong like supergirl!
“Blood donors are my heroes. I would say a big big thank youuuuuu!! Thank you for being so kind and not being scared of needles like me and I would give them a cuddle for being so kind and chocolate because I love chocolate.”
Sickle cell disease is the name for a group of inherited conditions that affect the red blood cells. The most serious type is called sickle cell anaemia.
Sickle cell disease mainly affects people of African, Caribbean, Middle Eastern, Eastern Mediterranean and Asian origin. In the UK, it's particularly common in people with an African or Caribbean family background.
People with sickle cell disease produce unusually shaped red blood cells that can cause problems because they don't live as long as healthy blood cells and they can become stuck in blood vessels.
Sickle cell disease is a serious and lifelong condition, although long-term treatment can help manage many of the problems associated with it.
Black, Asian and minority ethnic donors are specifically needed right now because:
some patients who receive frequent blood transfusions need blood to be closely matched to their own
a number of blood conditions, like sickle cell disease which is treated through blood transfusions, most commonly affect black, Asian and minority ethnic people
the best match typically comes from blood donors from the same ethnic background.
Giving blood
While people from all communities and backgrounds do give blood, fewer than 5% of our blood donors who gave blood in the last year were from black, Asian and minority ethnic communities.
This is despite black, Asian and minority ethnic communities representing around 14% of the population. We want to try and readdress this balance.
If you have the sickle cell trait you can still become a blood donor.
For further information please visit here.
Participants also heard about the changes to the Organ Donation system – from ‘opt in’ to ‘opt out’.
From spring 2020, all adults in England will be considered potential organ donors, unless they choose to opt out or are in one of the excluded groups. This is commonly referred to as an ‘opt out’ system. You may also hear it referred to as 'Max and Keira's Law'.
What do you have to do?
If you want to be an organ donor, the best way to record your choice is to join the NHS Organ Donor Register.
If you do not want to be an organ donor, you should register a ‘refuse to donate’ decision on the NHS Organ Donor Register. This is also known as opting out.
If you are already registered on the NHS Organ Donor Register, and your decision remains the same, you should tell your family what you want.
If you want to change your decision, which is already registered on the NHS Organ Donor Register, you should amend your registration.
Whatever you decide, make sure you tell your family, so they can honour your choice.
For further information please visit here.
