Three years ago, we introduced you to Avari, a Diamond Blackfan anemia* patient, on the milestone of her 100th transfusion. Now, she has surpassed her 150th.
Avari gave an open, startling and heartfelt speech to a room full of fellow Arizona teenagers who are dedicated to giving blood and holding blood drives at their high schools. This is a transcript of her speech at the annual event to motivate them in their efforts to hold successful blood drives in their schools.
“First off, I’d like to thank everyone for being here today. I really appreciate the opportunity to share my story with you. I know it helps when people, especially the people donating blood, hear how the donations are used, why it’s important to donate, and about the lives they save when they do. 
I’m 13 years old and, as my mom stated, I’ve had Diamond Blackfan anemia (DBA), my entire life. We drive hours every three weeks to Phoenix Children’s Hospital (PCH) from Flagstaff for a blood transfusion. I have had 151 transfusions now and, as you can imagine, that’s a lot of blood being used for just me. There are so many people who depend on it just like I do.
Because of the chronic transfusions, I have to take chelation medication to help remove the excess iron from my liver and other organs. The chelation medication can harm my eyesight and hearing, so I have to have that checked regularly, too.
Sometimes the nurses at PCH have a hard time accessing the veins to get an IV in. I have even had trips where I took up to seven times to get the IV in and every time it’s quite painful. Even if it’s a successful IV, there have been times over the years that they have not had blood available for me to receive my transfusion. This is truly terrifying. Not only does this mean we will have to make another trip down to PCH, but it also means I have to endure everything that comes with having low hemoglobin until they are able to have enough donations on hand for me.
The times I have had to wait and come back to PCH for my transfusions are the worst. When my hemoglobin gets low, it’s hard to be physically active and it affects my concentration. I have a hard time forming even normal thought processes. School is difficult. I often have headaches. I feel the need to sleep more. Social interactions are more difficult. I can’t reach the physical demands of sports activities, and I love playing volleyball. It can even be hard to carry on a basic conversation which is all crucial as a teenager.
So, the days, and even weeks, leading up to a transfusion are challenging to say the least. I feel reluctant to tell my peers about my DBA because I just want to have a regular life. I have actually been bullied in the past for not being able to be as physically active as others in P.E. and sports. This makes me all the more grateful for the donors over the 13 years of my life.
It’s really amazing to know that the teenagers are donating the most blood in Arizona for people like me. There are so many that depend on lifesaving transfusions like me just to live. It is truly humbling to know that teens are willing to step up in such a magnitude. It really is one of the most selfless acts of kindness to donate so that people like me can live life to the fullest.
Not many people know truly how important this all is. Please encourage others to donate blood. You never know when you or someone you love will be on the receiving end. It’s amazing to think that someone here at this event could donate blood that I will receive in just a few weeks at my next transfusion. Again, I am honored to share my story, especially with other teenagers. Thanks again for being here today.”
*Diamond Blackfan anemia is a rare blood disorder that prevents those who have it from producing red blood cells.