About Me

Hello everyone my name is jake and I'm 4 years old, I live with my mummy, daddy my brother and soon my baby sister. My mum has started a blog so people can learn all about me. As she tells me everyday that I am special and I have a very rare condition called Diamond Blackfan Aniema, and it only affects 600-700 people in the world and only 105 of them are in the United Kingdom. The condition is where my bone marrow doesnt produce red blood cells, so my body functions on less than half the level it should. Our heamoglobin should be between 13 and 15 and mine are very very low, when I first fell ill they were only 3.9. And now are alittle higher. I am living on blood transfusions, and a very high dose of prednisolone. This is my future. I will up date as much as I can I hope you will join me on my journey..xx

Tuesday 23 August 2011

Just a quick update, we did'nt get far into jakes week off, but we made a good start we mananged to go swimming saturday which jake loved. But looked so washed out after. And then sunday he seemed to really be tired and extremley pale, monday came round and he looked like he was auditioning for casper, so took jake for a check up at the hospital. And his blood had dropped again by 1.2 in 5 days of last being there. So my poor little man has had to have another transfusion.
I just hope his blood goes up enough for his appointent next week, so he doesnt have to have another transfusion then too.
His transfusion went went well enough, except he cried alot throughout it, as he does'nt understand why he has to have his orange juice. But he seems alot brighter this morning so fingers crossed. I have 1 brave little man, and he keeps is mummy strong. x
Interesting fact of the week Jake has had  the equilevent in blood transfuions to a large bottle of pop.

Bee Happy


No comments:

Post a Comment