Meet Cicelia and Brianna Dobson, beautiful and full-of-life-and-love, eight-year-old twins from Columbus. Their smiles and engaging personalities hide a health struggle the girls have dealt with since birth. The twins have Sickle Cell Disease. But it doesn’t stop them or their mother Courtney who is a fervent advocate for her daughters and ultimately all who are challenged with this disease.

Courtney faced a parent’s worst nightmare shortly after Cicelia and Brianna’s births. She has sickle cell trait, something she’s known since her childhood. “The directive from the doctors was just don't marry somebody with sickle cell trait and you should be fine,” Courtney said. Before starting the family planning process with her husband, she made sure that he did not have sickle cell trait, putting them both at ease.

After finding out that they were expecting, Courtney’s doctor requested genetic testing on her husband just to make sure they were preparing for anything and everything. The testing confirmed the lack of sickle cell trait in her husband, however it revealed that he has beta thalassemia minor, a trait with no symptoms, but one that can lead to sickle cell disease developing in children born to a carrier of both it and sickle cell trait.

“When the girls were born, we did their newborn screening and it came back as abnormal,” Courtney recalled. Three months after the girls entered this world, they were diagnosed with sickle beta plus thalassemia, one of the variants of sickle cell disease.

The following months had the family meeting with doctors and developing a plan for the girls. Sickle beta plus thalassemia is considered “mild,” meaning there have been fewer studies done on the children living with it compared to other more severe versions of sickle cell disease.

“What they mean by mild is, you know, somewhere between 2-10 hospitalizations a year, each lasting 5 days long. Pain crises, having to take Droxia every day, which is a chemo medicine. Missing 45 days of school, having functional asplenia. So, your spleen is there, but it just doesn't work to filter out infection. Having to get antibiotics and labs and blood draws every single time you have a fever over 101 and always getting fevers over 101 because you get hospitalized when you have the common cold or the flu because it's so harsh on your body,” Courtney said. “That's what they mean by mild.”

Challenges arose almost instantly. “We were at the hospital all the time,” Courtney remembered. “You are told that until your kids turn one, anything that's a true fever, which is 100.4, that you need to be at the hospital probably within an hour to start the sickle cell protocol of getting them labs and antibiotics.”

As the girls got older Courtney had to take other things into consideration to help them avoid crises, such as avoiding high heat or severe cold weather situations, a delicate line to walk living in Ohio. “We were told that the kids can't get too hot, they can't get too cold, they can't go outside if it's above 80 degrees, they can't go outside if it's below 40 degrees,” Courtney recalled. All the thought and precautions that go into day-to-day life for Brianna and Cicelia could be exhausting, but Courtney refuses to let that frame how she feels.

“It is the blessing that we fight for,” Courtney says of all the effort that the family puts into making the sure the girls can live as normal lives as possible. “All of the nights of being up at the hospital, all the trying to remember if they took their medication, all the heating pads and heating packs and everything. It's what we fight for, right? To get to see your kid doing these things.”

The twins followed in their mother’s footsteps by getting involved in the arts scene. Courtney, a theatre kid to her core, instilled a love for the arts in the girls from a young age, leading to them participating both on stage and behind the scenes in local productions. On top of that, Cicelia is a dancer with BalletMet, meanwhile Brianna is a singer with the Columbus Children’s Choir.

These activities, the normalcy the family strives for, relies on the constant attention and care of the doctors the girls see and the professionals in charge of their care. The girls have spent many days in the hospital, it’s just part of life with sickle cell disease, and Courtney knows that her, her husband and the doctors in charge of the girl’s care aren’t the only ones needed to ensure that Cicelia and Brianna’s quality of life remains high.

“The folks that live with sickle cell, the quality of their life depends upon the support that they have from other people. And that is true for the doctors and nurses that they come in contact with, the teachers that they have, the parents and family that they have, and also the blood donors,” Courtney continued. “My kids haven't needed a blood transfusion yet, but… this is not an illness that you can fight by yourself. Which means we need donors. The blood has to be available. We can't afford for it not to be, because I can't donate blood for my kids. I can donate blood plasma, but it doesn't work for me to donate to my kids because I have sickle cell trait.”

“Their quality of life is dependent upon the support of other people.”

The twins will continue to live their best lives, and one day may need the blood on the shelves, donated selflessly by folks from all around the country. You can help us make sure the blood is on the shelves for Cicelia, Brianna and everyone else that needs it by visiting RedCrossBlood.org and booking your appointment to give the lifesaving gift of blood.