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June 20, 2016 – 14 years ago CAF ran a story about two siblings (Mia and Teddy Xyloportas) whose thalassemia was cured through a bone marrow transplant. They were fortunate that their sister Marcella was a match for both of them and was able to donate bone marrow for a successful BMT. (You can download our earlier article on the Xyloportas family by clicking here.) Below Marcella gives an update on what life has been like for her and her siblings since that time.
When I was very young, I learned that my family was not like most others. While other kids our age were playing outside, we were in and out of hospitals. My older sister and younger brother were born with thalassemia major, a disease that prevented their bodies from creating healthy red blood cells. My parents were told they would live short, compromised lives. The only known cure for thalassemia is a bone marrow transplant and this requires a donor who is a perfect genotype match for the patient.
My parents prayed for a cure and before I was born saw a vision of the patron Saint of fertility, Irene. She was carrying a basket and smiling. We got our miracle. Not only was I healthy, but I was a perfect match for Mia and would be a perfect match for Teddy as well. Our family made the decision to go ahead with both bone marrow transplants for my siblings. None of it was easy; they lost their hair after chemo, Mia went into septic shock, almost dying, and they were both isolated from the world for months with no immune system – but it worked. The transplants took and they were cured.
Last summer I watched my dad walk my sister down the aisle. She went to Rutgers University, rode horses on their equestrian team and got her first job after graduation. My little brother bought himself a car in high school, attends Rider University and is starting his first internship in a few weeks. Thalassemia does not physically affect their lives now. They do not need blood transfusions, nightly Desferal or constant checkups, they are perfectly healthy.
A thought came to me a few nights ago. While cuddled next to my stuffed animal, Mousey, who my five-year-old sister once cherished and gave me as a gift before her transplant; I realized that, though our family has lived a new life since the transplants, our life is still in some ways different from most others. It always will be. Thalassemia played a huge part in who we all grew up to be and will always be with us.
Our family knows how thin the line between life and death is. We were one of the lucky ones, but many of the families we met were not as fortunate. They continue to live with the physical presence of this disease every day, and even though they lead wonderful lives, building careers, having babies and getting married, I cannot imagine how hard it is for them.
I want to continue to share our story to spread awareness and show those who are fighting that there is hope. I encourage people to donate blood and get on the list to donate bone marrow; saving someone’s life is a gift in itself. I know a thing or two about that and trust me when I say the patients are the real heroes. My brother and sister save me every day.
When I asked Teddy what it is like to be cured of thalassemia he responded, “I am grateful for the doctors, my sisters and the decisions my family made. They gave me the opportunity to live an extraordinary life.”
Mia, also grateful, replied that she still thinks of the other patients often and hopes that one day a universal cure for thalassemia can be found to help everyone with the disorder.
Today Mia is married to the love of her life. They are living in their first house in Pittsburgh, PA, with their adopted dog Penny. Teddy is thriving in college experiencing the best life a 20-year-old could ask for. He looks forward to graduating and starting his career in business. And me, I’m living and working in New York City a few blocks away from the hospitals that changed our lives forever. It is a constant reminder of how blessed we are – not that I could ever forget.
(Marcella works in the fashion industry and as a freelance writer in NYC. She is currently working on a novel, Wooden Doors, about her family’s story with thalassemia.)