hi-im-irelynnHey! I’m Irelynn Rose!

You’d never know by looking at me that I require blood transfusions every month in order to survive!

I’m 6 AND a half years old!! Momma says I’m 6 going on 16! I enjoy playing with my “Nana” who’s my big sister, being outside catching my chickens, jumping on the trampoline. I also like to be a girly-girl and wear jewelry and put on lipstick and being fancy is a favorite of mine. I’m a very normal, active and sassy little girl! I’m in 1st Grade and enjoy learning at school and socializing with my friends while there. You’d never know by looking at me that I require blood transfusions every 3 or 4 weeks in order to survive. You see, my bone marrow doesn’t make red blood cells. I was born this way, but my parents and pediatrician all thought I was a normal baby. I’ve had #109 blood transfusions to date!

I gave them a huge scare when I was five weeks old. I began vomiting, quit eating and started grunting all within a short period of time. Mommy took me to the pediatrician’s office to see what was wrong, and the doctor rushed me to the emergency room next door. I was in heart failure with a hemoglobin of 2.8 (normal is 10 or above). This is when we found out I have Diamond Blackfan Anemia, or ‘DBA’.

  • So now, blood transfusions are ‘normal’ to me.

I have a port that is used to administer the blood through. His name is “Bumpy”. I will proudly show him to you, located on my right rib cage, if you ask to see it. Going to see my hematologist, “Dr. J.” every few weeks is just part of my schedule. I like him very much, and I’m quite good at charming all the nurses. ~Actually they adore me! 😉 I do very well with the pokes and don’t even flinch! My sister came along with me to have blood drawn recently. She was amazed that I didn’t even make a sound when they drew my blood. I put some adults to shame! If you’d like to see me at clinic getting accessed, please click this link: http://youtu.be/LGpdlkInMrI  It’s pretty impressive cause, I’m a trooper like this everytime I go to get blood or have to get stuck. 🙂

My little body is already iron overloaded due to 100+ transfusions. I am on a medicine, called Jadenu, a pill I take to help take iron out of my body. I’m pretty good about reminding my parents every evening I need my medicine..sometimes they are forgetful. My last MRI Ferri-Scan came back with not-so-good results, so doctors bumped up my chelation meds. Hoping to get that mean, old iron out of my liver!

I’d like to thank you if you donate blood. Blood donations give me LIFE and without selfless people donating, I couldn’t survive. Did you know that only five percent of eligible Americans actually donate blood?! One pint of blood can save 3 lives! I encourage you, if you’ve never donated blood, to start today. Do it for me, do it for others. A favorite saying of my parents is: “You may not be dying to give blood, but one day you might be dying to get it.” Thanks for taking a look at my page and helping support our cause. We hope to raise money and make a difference and give it to the doctors and scientists that need funds to research DBA. In my lifetime, I sure hope to conquer DBA!! With my parents help, and yours I intend to! And, that’s my story. 🙂

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