- The Enterprise
- The Recorder
Kaitlyn Adams is a self-described princess.
Wearing a silver Tiffany and Co. heart toggle necklace, pink polo shirt, her aquamarine manicure setting off rows of candy-colored friendship bracelets lining her wrists, no one would argue with that description, not with a 13-year-old girl.
But her friends and family might add that she is also a warrior.
Kaitlyn has been battling sickle cell anemia since she was born, even before. Her mother, Tijuana, and dad, Paul, are both carriers of the gene — according to Faces of Our Children, an organization dedicated to raising awareness of the disease (and for which Kaitlyn is a poster child), one in 12 African-Americans is a carrier of the sickle cell gene.
The disease affects genes that produce hemoglobin in red blood cells. Hemoglobin attaches to oxygen in the lungs to deliver throughout the body in red blood cells, according to Faces of Our Children’s website.
Instead of doughnut-shaped blood cells, people with sickle cell have sickle-shaped or “banana-shaped” cells, Kaitlyn said. The disease causes parts of her body to be deprived of oxygen, causing severe pain at times. She attempts to keep the pain at bay by staying hydrated, keeping stress levels down, applying heat to affected areas and taking medicine.
But when a pain crisis hits, Kaitlyn usually ends up having to be treated with morphine at Children’s National Medical Center in Washington, D.C., where she is on a first-name basis with most of the staff of the fourth floor.
Usually a bubbly, laughing teen, Kaitlyn said she becomes a different person when she is going through a pain crisis. She’s brought more than a few people to tears and her older brother, Jalen, refuses to see her when she’s going through one; he can’t handle watching his little sister have to fight something like that on her own.
There’s crying, screaming, hallucinating, Kaitlyn said.
When she’s having a crisis, she can count on one guy to help her through.
“I have to say the No. 1 person that can handle my pain is my dad,” she said. “He’s so patient. I’m a daddy’s girl.”
She has never been left alone in the hospital; there is always mom or dad, family members or friends to look over her. Her parents’ jobs have been great about the family’s situation, Tijuana said.
But now that Kaitlyn is 13, a little more independent and can communicate with nurses and doctors about her pain levels, there are times she is left on her own.
She keeps up on the Theodore G. Davis Middle School grapevine via texts with friends and with her schoolwork thanks to the Chronically Health-Impaired Program or CHIP, which provides instruction to students who are unable to attend classes because of illness. She is an honor roll student who is a member of Students Against Destructive Decisions, Student Government Association and the National Junior Honor Society.
She is also a huge Justin Bieber fan, loves cheerleading and helps coach younger kids, traveling, shopping, baking cupcakes and “My phone is my life,” Kaitlyn said, with her dad nodding as if that were an understatement.
The one thing that will cure Kaitlyn of sickle cell will be a bone marrow transplant. The odds are in favor of a sibling being the closet match. Jalen, 17, and a student at North Carolina A&T State University, stepped up immediately and was “devastated” when he found out, three days before Christmas, that he wasn’t a match, Tijuana said.
Back to the drawing board; the National Bone Marrow Program registry found three matches for Kaitlyn. Of the three matches, one person has started to undergo additional tests to prepare for a transplant, Tijuana said. Joining the registry is as simple as donating blood and can mean saving a life. Donors remain anonymous but can reveal themselves in a couple of years after the transplant, Tijuana said.
“It doesn’t hurt to donate,” said Nardos King, Tijuana’s sorority sister and longtime friend, who is the public relations coordinator for Kure 4 Kaitlyn and is on the bone marrow registry. “You can save a life.”
The transplant re-creates the donor’s healthy cells in Kaitlyn’s body, Tijuana explained. There is a minimum of six weeks in recovery, up to four months. Her immune system will be shot in the beginning, keeping Kaitlyn out of school for 100 days and in the house for about 60 days to keep her from being exposed to germs that can make her sick.
“Whoever it is giving me the bone marrow has a big heart to go through this for me,” Kaitlyn said. “They are basically changing my life.”
With a transplant costing more than $500,000, many transplant families are unable to shoulder the financial burden of such a procedure, according to the Children’s Organ Transplant Organization, a nonprofit that helps with organizing communities to raise money for transplant-related expenses. Kaitlyn’s family and friends formed Kure 4 Kaitlyn through COTA, undergoing COTA training. The team is aiming to raise $50,000 to help the Adamses.
“We wanted to do whatever we can,” King said. By working with COTA, which has been named a charitable partner of Fox Sports this year, King hopes more people will be willing to give knowing their donations are going to an reputable organization ensuring Kaitlyn and her family are being benefited.
Kaitlyn will have to go through two weeks of punishing chemotherapy in preparation for the transplant, and in the worst case scenario, she could be in recovery for months, missing promotion, the eighth-grade formal and confirmation at Our Lady Help of Christians Church in Waldorf. She’s used to missing out on things. She had to skip a trip to Myrtle Beach, S.C., with a friend and her family because of a pain crisis that landed her in the hospital and she had to give up competitive cheerleading when the doctors put the kibosh on it. It’s worth it. If this bone marrow transplant works, her life will be turned around.
Inspired by her caregivers, she wants to be a registered nurse or nurse practitioner.
“I want to work at Children’s and nowhere else,” she said. “I want to help people like people helped me.”