Hi, my name is Mia
...I have been trying to find a cure for Diamond Blackfan Anemia for a very long time. I don't produce any red blood cells at all. I have been living off of people generously donating their blood to me as a way of survival every 3 weeks. I go into the hospital to receive 2 units of (either A+ A- O+ O -) blood through an IV. It's been a long 20 years of doctor appointments, tests and transfusions. Well over 300 people have helped to save my life through blood donations.
Recently I've had some reactions to the blood I received. In April of 2022, I had a TRALI - Transfusion-related acute lung injury, my lungs were attacked by the presence of the blood donors leukocyte antibodies in the little bit of plasma found in the donation. It was pretty scary not being able to breathe. Thankfully after a few days in the hospital, I was ok.
I am so thankful to have a chance at life that blood donors have given me for the past 20 years. I have been a huge advocate for encouraging people to donate blood through VITALANT and signing up for Be The Match the world's largest bone marrow registry. There is still no 10/10 HLA match for me in an unrelated donor around the world.
That's why I have decided to move forward with a Haploidentical Transplant using one of my siblings as a half-match. I would love the chance at being cured, so in God's perfect timing, I am stepping out in faith in hopes that HE will heal me through this transplant. If you are able too, please pray for me that I will be healed.
My dream has been to go on a long Europe trip to Greece & Italy, (maybe London too since my Grannie is from there!) but having to get blood transfusions every 3 weeks has prevented me from traveling that far away and for a long period of time. I would love to see places with my own eyes and have an epic adventure after my doctor gives me the, all clear. (In about a year from my transplant)
It is something for me to look forward too for sure!
Thank you SO much ti everyone who has already donated, I am so excited and thankful!
My new re 'birthday' was March 9th, 2023 (Day 0.) My sister Maddy underwent a bone marrow harvest (extracted from her hips) and an hour and a half later it was transfused into me. On Day + 16 (March 25th) we started to see some new cells appear. What an exciting time for my family and I. We are so thankful for all the support you have given us over the years, especially to all the blood donors making it possible for me to even be here today to receive a bone marrow transplant.
If you've followed along my journey, you saw that I couldn't go to the Taylor Swift Concert to the Eras Tour in Glendale. It's ok, I mean, I am being cured and waited my whole life. My nurses brought Taylor Swift to me, haha! Thank you nurse Lynn for making me these to hang up in my room so I could be a part of it some kind of way.
But if anyone wants to send me and my nurses to the LA concert (when I'm feeling much better by August, hopefully!) that would be an amazing experience. My dad said he would go in with someone or a business if possible to get a suite since I can't be around too many people. haha, its fun to dream!
I'm so thankful for these nurses who come in on their days off to check up on me and for simply getting me through this process and giving me all the meds.
If you can donate blood and now platelets to help people stay alive like me, that would be wonderful, I can never say thank you enough for getting me to where I am today. I am 20 years old and ready to be cured! THANK YOU! (Check out my Instagram if you want to see more of what's happeing in BMT process :) Love, Mia