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Craig Bowser

Chloe Amira DBA Awareness

I am raising awareness and raising money for Diamond Blackfan Anaemia Support Group Uk because I have this condition and want to help others

706 %
£3,531.75
raised of £500 target
by 83 supporters
Donate

Diamond Blackfan Anaemia Support Group Uk

We fund research and host patient events to offer hope and support to those with DBA

Charity Registration No. 1083179

Story

Thanks for taking the time to visit my JustGiving page.

My name is Chloe Amira and I am 7 years old. I have a rare blood condition called Diamond Blackfan Anaemia which only effects around 700 people in the whole world. I don't produce my red blood cells so have to have blood transfusions every 3-4 weeks. Lately I have developed anti-bodies in my blood which makes it harder and riskier every time I receive my blood transfusions. I am currently waiting on a stem cell transplant but there isn't a match on the register for me so my mammy and daddy and friends and family are doing lots of register recruitment events to try and find a match for me. If you would like to register please visit DKMS UK website or Anthony Nolan. I don't mind blood transfusion days as my mammy and daddy let me wear my Disney Princess dresses and I always look beautiful. The nurses always play with me and they love my dresses. I also have to have needles in my legs and stomach every night for 12 hours to get my medicine that gets rid of iron overload. I don't like the needles but I have to have them or I could go deaf and blind from too much iron in my body. I also have to have a PEG button in my stomach as I am a very fussy eater. I like sweeties and chocolate like every other little girl or boy but I struggle to eat meals. I have special milk through my feeding tube into my button that will make me big and strong. I get every little cold that goes around and sometimes I have ended up very poorly and had to have oxygen due to my immune system being very low. I have 9 specialists look after me from development specialists to haematology specialists and even diet nurses to help me with my eating. I have quite a lot goes on in my life but I am very chatty and funny and I like to talk a lot. My mammy and daddy will vouch for that. I am a happy little girl but some of the other people with DBA don't find it so funny. I just want to raise some money to help DBA UK and the people that are like me. I understand that it is a big ask but if you could donate some money no matter how big or small after reading about me then I would be really thankful and so happy that the other DBA boys and girls are getting the best care and research possible. That would make me very happy.  Thank you. Love Chloe Amira xxx

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