born with hearts of a champion, living with sickle cell

Article written in partnership with The Community Blood Center

Ten-year-old Dominic Jones is the little guy with a big heart on his Xenia peewee football team. His six-year-old sister Saretta is the one with the big smile through every step of her hip hop dance class. If they run short of breath and need a break, it’s a concession they’ve learned to accept as they grow and survive Sickle Cell Disease.

Their mom Lauren Jones has many reasons to celebrate her children’s courage and milestones in the fight against Sickle Cell.  A special success during this September Sickle Cell Awareness month is seeing them back in school, healthy and happy.

Sickle cell disease is the most common inherited blood disorder in the U.S. The patient’s red cells are crescent or “sickle” shaped. They block blood flow and cause painful episodes that can last for days. The disease disproportionately impacts Black and Hispanic people and is best treated with blood transfusions from donors of the same ethnic group.

Lauren is a sports performance trainer in Xenia and a former track star: Three-time 100-meter GWOC Champion, member of the Xenia High School Athletic Hall of Fame, and all-conference at the University of Dayton in both Indoor and Outdoor Atlantic-10 Championships.

Adding to the family pedigree, Dominic’s dad Damario Jones played football at UD.  Both parents have the Sickle Cell trait. Lauren found out while pregnant, but Dominic’s diagnosis came as a cruel surprise.

“It was difficult in the beginning,” said Lauren. “First of all, he was a preemie. It had nothing to do with Sickle Cell, but he was immune compromised because he was born so early.  We found out a few weeks later than normal, when he got home, that he had Sickle Cell. It was another big blow.”

It was just the beginning of the challenge for the young family and continued care at Dayton Children’s Hospital, a partner with Community Blood Center. “He had swollen hands and fingers,” said Lauren. He had fevers. You had to go to the ER if it was over 101 degrees. I can remember him having fevers often.

“When he was one, he had acute splenic sequestration, it’s when blood is trapped in the spleen.  That’s pretty much like a person bleeding internally and the shock they go into.  I was a young, experienced mom - I drove him to the hospital - I didn’t know. He was not very responsive.  He went limp. Barely opened his eyes. They drew blood, put the needle in, and he didn’t move. That was pretty scary.  That was the first time he ever needed a blood transfusion.”

Dominic began a regimen of monthly blood transfusions for a year, which helped shrink his swollen spleen.

At age three he began treatment with Hydroxyurea, a medication first developed as an anti-cancer drug, that makes red blood cells larger and helps them stay rounder.

“It produces more fetal hemoglobin in bone marrow, so cells aren’t sickle as much,” said Lauren. “It’s actually a small dose of chemo, so it was a little difficult to choose to do it.  When Dom started, not very many parents were choosing to do it. Since then everyone is on it.”

Dominic was age four when his sister Saretta was born.

“We went back and forth,” Lauren said about the decision to have another baby. “I didn’t want him to be an only child, but I was fearful about having any more. I knew there was 75% chance they would be fine, 25% chance they would have it, then a 50-50% chance they would have the trait. Unfortunately, Saretta had it.”

Lauren knew what to expect. “It was pretty much the same story,” she said. “Everything he went through, she went through. It was pretty unsettling since you know what’s coming next.”

Like her brother, Saretta began monthly blood transfusions when she was one, and went on Hydroxyurea at age three.

“They have needed blood transfusions here and there,” she said. “If their hemoglobin drops, or if they have to go under for surgery, they need a transfusion.”

Saretta had minor surgery at age four. Dominic’s gall bladder was removed in March, a consequence of gall stones caused by Sickle Cell. “It’s more typical when they are teenagers, so he was pretty young for it to happen,” said Lauren. “Something was not right. He had gall stones and we didn’t know it.”

Dom and Saretta are both back at Cox Elementary School this fall, after staying home last year during the height of the COVID-19 pandemic.

“I kept them home last year and homeschooled,” said Lauren. “I decided to keep them home second semester because I wasn’t comfortable enough. They didn’t have colds or anything - they were healthy the whole year. They’re more prone to respiratory illnesses. But I can’t keep them in bubble.  That’s what I was afraid of, going back to school and all these germs. But it was, ‘They’re going back to school if they have to wear a hazmat suit!’ They wanted to go back.”

Next year Dominic will move up to the middle school. “He lets me know every day, ‘This is my last year in elementary!’ I say, I don’t want to know that! I appreciate the fact they’re here and their growing, but it’s too fast!”

It means growing up with Sickle Cell.

“They’re managing it, they have their medication, it’s understanding the triggers for pain episodes,” said Lauren.

“Dominic plays sports all year.  I get nervous. I try to keep an eye on it. Football, basketball and track. He’s a pretty good athlete - he has natural talent - but he doesn’t get as much oxygen as everyone else, and he’s a little smaller for his age.

“It balances out. He does what he’s able to do. He gets winded a lot more. He’s starting to understand these things about his condition, and when to ask coach to sit out.”

Saretta has asthma symptoms but lately has been less reliant on an inhaler. “She played basketball one years, she’s smaller,” said Lauren. “She’s in a hip hop dance class now. She just smiles the whole time! It’s a lot less demanding than sports.”

For Lauren and her children, knowledge and awareness are the best armor against Sickle Cell.

“My hope is that they will become learners so they can know what is best for their bodies,” she said. “I’ve been researching since Dom was born. So, they can learn to do things for themselves. I hope that more people become educated so they can get the care they deserve.

“Become their own advocates. View Sickle Cell as a way to be influential, for others, for the way they live without limitations. Be positive through the situation, too. If they can, use it to impact somebody in some kind of way.”

Author: Mark Pompilio, Community Blood Center