Young Patients Bond Over Shared Blood Disorder, Treatment at Rady Children’s
Ella Martinez and Kamila Saradpon consider each other sisters. They hang out together, laugh, share secrets, and play games. They even went to school together for a time. They celebrate each other’s wins and encourage each other to keep going during tough times, as sisters do. And though they’re not genetically related, they are bound by blood.
Both girls live with thalassemia, a rare genetic blood disorder that hinders the body’s production of hemoglobin, a component of red blood cells responsible for carrying oxygen to other cells. There are different types of thalassemia, and they can range in severity from asymptomatic or mild anemia to serious health problems, including an enlarged spleen, iron overload, and bone deformities. The most severe types require frequent blood transfusions, likely for life. Kamila and Ella both require transfusions—Ella every two weeks and Kamila every three. Both girls receive transfusions at the Peckham Center for Cancer and Blood Disorders at Rady Children’s, which, coincidentally, is what brought the best buddies together in the first place.
And Then There Were Two
Ella’s mom, Erica, had never heard the word “thalassemia” until she became pregnant with now 16-year-old Ella and her twin brother. The children’s father mentioned that he was a carrier for the condition.
“At the time, I had no idea what that meant,” she says.
Her doctor explained that some people carry the thalassemia trait, but it was uncommon. And even if she and Ella’s father were carriers, it was unlikely they’d be carrying genes for the same type. Plus, even if they both had the same type, which genetic testing later revealed that they did, there was still just a 1 in 4 chance that the child would develop thalassemia.
The twins’ newborn screenings indicated that neither child had thalassemia, but at Ella’s four-month check-in, her pediatrician noticed that her hemoglobin count was low. At 6 months, Ella was referred to a hematologist at Rady Children’s and was diagnosed with a severe form of thalassemia. She had her first blood transfusion three months later.
Then, Erica realized just how rare transfusion-dependent thalassemia was. More than a million people around the world have thalassemia, with about a tenth of those being transfusion-dependent. Many are in regions where the condition is more common—Mediterranean countries, like Greece and Turkey, as well as in Asia, Africa, and the Middle East. In the U.S., it’s estimated that 1,000 to 1,500 people have transfusion-dependent thalassemia. Even fewer of those are pediatric patients, and fewer still live in the San Diego area.
“It seemed like nobody knew about thalassemia.
I was always asking the hospital, ‘Is there anybody else?’
I felt like when I first started with her, there was a lot that
I didn’t know,” Erica says.
When Ella was 6, her family was introduced to the Saradpons. Kamila, now 10, was just a baby, but the girls had an immediate connection.
“We agreed to meet at one of Ella’s blood transfusions. It was really emotional to see someone looking completely normal and beautiful getting a blood transfusion just like my baby gets blood,” says Kamila’s mom, Maria. “We sat Kamila down on the bed, and Ella was playing with her right away. She gave her a little toy that she had gotten at McDonald’s. Ella had a Happy Meal, and Kamila was drooling over the toy that came with it. That’s a core memory for sure.”
Maria and Erica learned they had a lot in common, too.
Like Erica, Maria found out she carried the trait for thalassemia while pregnant, never having heard the word “thalassemia” before. Maria’s husband, Kris, was found to be a carrier, too, and, just as Erica experienced during her pregnancy, the couple was told the chances were slim that they carried the same type. Even after further testing revealed Kris and Maria did carry compatible traits for thalassemia, odds were still in favor that Kamila wouldn’t be affected.
“We scheduled a meeting with a genetic counselor because I had questions about what life with thalassemia would look like if Kamila were to have it. We didn’t know anyone who had this blood disorder,” Maria says. “Unfortunately, the genetic counselor was only able to discuss the likelihood of Kamila inheriting thalassemia from us, 1 in 4, and not any specifics about the disease.”
When Kamila was born, her newborn screening results revealed an intermediate form of thalassemia, and she was referred to a hematologist at Rady Children’s. Kris and Maria started taking Kamila in for labs there every couple of weeks, holding on to hope that she wouldn’t require blood transfusions. While initial blood tests were normal, a routine check just a few weeks later revealed a different story. Kamila needed an urgent blood transfusion at only 2 months old.
“My heart sank when they mentioned needing a blood transfusion,
but I could tell right away that it made a huge difference for Kamila.
She seemed so much stronger, nursed better, and was more energetic
after just one. Even though it was scary and unsettling watching our
baby receive blood at such a young age, it was such a relief to see her
feeling better,” says Maria.
Ella and Kamila developed a bond quickly.
A Place Just for Them
Both girls are patients of the Comprehensive Thalassemia Center at Rady Children’s and UC San Diego. Its multidisciplinary team sees about 90 kids from Southern California, though only around 10, including Ella and Kamila, require blood transfusions at varying frequencies.
Some people with severe forms of thalassemia, like the types Ella and Kamila have, need regular blood transfusions to replenish their red blood cells. People with less severe forms may need an occasional blood transfusion, for instance when they’re sick or have an infection. Transfusion-dependent thalassemia patients also must take medication to remove the extra iron from their bodies.
“There are certain types of thalassemia that would predispose a person to need transfusions for their whole life. Ella has beta thalassemia major, which is the most severe form of beta thalassemia, and Kamila has hemoglobin E beta thalassemia, which is also severe,” says Jennifer Yu, MD, medical director of the Comprehensive Thalassemia Center and associate clinical professor at UC San Diego School of Medicine.
For Ella and Kamila, transfusions have become just a part of life. As young as age 3, Ella could tell when she was due.
“Ella would tell me to call the doctors and tell them that she needs blood,” her mom says. “I would call my case manager, and she’d tell me to bring her in for labs. And every time Ella told me she needed blood, she needed blood. I learned at a really young age to listen to what she says because she’s so in tune with her body.”
A transfusion appointment takes four to six hours. Ella and Kamila schedule transfusions at the same time when possible. Each appointment starts with lab work, then center personnel contact the San Diego Blood Bank for matched blood.
“We have a very specific blood volume calculator that we use. It’s the formula that tells us, based on their hemoglobin at the time and their weight, what volume they need to get to an ideal hemoglobin level,” says Dr. Yu. “Every time we order blood, we order it on the day of so we can get exactly what they need.”
The girls schedule their transfusions at the same time to support each other.
Both families say they appreciate that Dr. Yu and the rest of the clinic staff always listen to their concerns and respond with compassion and understanding. And when the girls are without each other’s company, hospital doctors, nurses, and child life specialists find ways to make their appointments comfortable and more fun. Kamila even calls Rady Children’s her favorite place.
“She’s treated like royalty at Rady Children’s—I’m not joking
when I say that her favorite place to be is there in that bed with
a nurse pampering her and doting on anything she does,” says Maria.
“She loves it there and looks forward to her transfusions.”
When Kamila chose to switch from using her port to IV transfusions, it gave Ella the strength to have hers, which had grown uncomfortable, removed as well.
“I saw Kamila having a hard time with her port. It was causing her a lot of pain, and she said, ‘I’m done. I don’t want that anymore,’” recalls Ella. “I was having problems with my port because I’d had it in for so long, and seeing how strong Kamila was inspired me. I thought, ‘OK, if Kamila can do it, I can do it.’ And because of seeing how strong she is, now I don’t have my port anymore.”
That support goes both ways, says Maria.
“Ella will tell you that Kamila has helped her be brave, and it’s also impactful for Kamila to have this big sister mentor who’s there to go through things with her or be brave with her,” she says. “And as a mom, I don’t know what I would have done without the support of Erica and her family. Our lives changed dramatically as we walked this path together. It’s important to know that you’re not alone. I used to feel isolated and ashamed, but connecting with Erica opened my eyes to the power of gratitude and giving back. By thanking donors and getting involved, we’ve found purpose and strength. We want to share that feeling of empowerment with others who are going through similar experiences.”
Turning Illness Into Inspiration
For both families, giving back is an important part of the healing journey. They’ve restarted the California chapter of the Cooley’s Anemia Foundation, a national organization that works to improve the quality of life for people with thalassemia and raises money for medical research. The chapter celebrates World Thalassemia Day every year with a family-friendly awareness walk, blood drive, and fundraising event.
Ella and Kamila thank blood donors for helping them.
Both families are now outspoken advocates for blood donation and work with the San Diego Blood Bank to raise awareness.
Ella recounts: “When I was really young, I would ask my mom, ‘How do they make blood, and where is it coming from?’ My mom contacted the blood bank, and they told us to come to one of their blood drives.”
The family attended Comic-Con that year and stopped by the San Diego Blood Bank’s annual Comic-Con blood drive. It was eye-opening to see so many people volunteering to give the blood that kids like Ella and Kamila depend on, Erica says.
“We talked to a few people, and it was such a positive experience for us,” she recalls. “It makes such a huge difference knowing that these people wanted to keep doing it as well.”
The Saradpons started accompanying them to blood drives, and Kamila hands out homemade thank-you cards to donors.
“When people donate blood, those people become family, too,” says Maria. “Whenever I see somebody wearing a blood donor shirt from the San Diego Blood Bank, I go up to them and say, ‘Thank you so much for being a blood donor. My daughter is alive because of you.’”
Both families say they’ve found purpose through their thalassemia battle, and that’s to inspire people to donate blood and put a face on its impact.
“Ella needs blood transfusions every two weeks.
That’s a lot of love,” says Erica. “I want to do
whatever I can to make sure there’s blood available.
We’ve heard from people who’ve been told, ‘We don’t have
blood for you. You have to wait, and we’ll let you know when
we have blood available.’ We are so thankful that we’ve
never had to experience that.”
For Kamila’s family, the thalassemia journey is also coming full circle.
“I strongly believe that Kamila having thalassemia has a greater purpose, and that purpose is that she’s able to get people to donate blood who have never donated blood before, and she’s able to be there now as an advocate and be a ‘big sister’ to younger kids, like Ella was to her,” says Maria.
And both families say that none of this would be possible if it wasn’t for the support they’ve received from the San Diego Blood Bank, donors, and Rady Children’s.
“I feel like thalassemia has given me so many opportunities and blessings, like the people I meet,” says Ella. “The San Diego Blood Bank and the Cooley’s Anemia Foundation, and the doctors and nurses at Rady Children’s, they’re all blessings to me, and I love them dearly.”