For sisters Kami and Kyra, growing up means living with sickle cell anemia, a chronic blood disorder that affects one in 365 African-Americans.
Kami, 17, enjoys sports, dancing, and volunteering for civic organizations at school while Kyra, 15, loves listening to music and watching funny videos on YouTube.
But they also live with severe pain, fatigue, malaise and frequent hospital visits for blood transfusions.
“It affects everything,” said Dana, the sisters’ mother. “It affects their school. Their bodies. Something that you’re not always told is how it affects you emotionally.”
Both need blood transfusions every three to four weeks to help manage sickle cell symptoms. Kami has received blood since she was 8, while Kyra has received blood transfusions for more than a year. Together, they have needed over 100 blood transfusions.
“The thought of my children not having blood when they need it is scary,” Dana said. “Blood donations save lives every single day.”
Dana is also considering marrow transplants for Kami and Kyra, which requires finding a match on the Be The Match Registry, a national database of potential marrow or stem cell donors.
“I just want them to have long, healthy and great lives,” Dana said. “I’m just trying to figure out whatever is out there to help them. I’m going to find it.”
To receive a transplant, Kami and Kyra will both need to find donors with similar genetic backgrounds. African-Americans are largely underrepresented on the registry, leaving patients like Kami and Kyra with only a 23% chance of finding the match they need.
The sisters don’t let the disease or the odds dampen their spirits. They are involved in The Lemonade Circle, a nonprofit that empowers young women of color to become leaders in their communities.
“People always ask me how I do it,” Dana said. “It’s hard not to when you see your kids fighting and trying to squeeze every ounce of life out of every day…They’re really amazing.”
Support Kami and Kyra by scheduling a blood donation by calling 210-731-5590 or visiting SouthTexasBlood.org. To join the marrow registry in their honor, text K2KLUV to 61474.
