Richon Badger describes her 10-year-old daughter, Cai, as colorful, sassy, and resilient.
Cai Stoudemire is a sickle cell survivor who recently wrote a book, Cai's ABCs of Sickle Cell.
"C is for Cai, of course," Stoudemire said proudly while reading from her book. "I was diagnosed with sickle cell beta zero thalassemia, and I like dogs."
Sickle Cell is a genetic blood disorder that affects millions of people. The disease disproportionately affects Black and Brown families. According to the CDC, 1 in 13 Black babies are born with the sickle cell trait compared to 1 in 333 White babies born with the trait.
"It takes two parents to carry the trait for sickle cell, and there's a 25% chance you will have a child with sickle cell disease. Cai fell into that 25%," Badger said. "Sickle-shaped blood cells are what we call sickle cells. They can clog her blood vessels and cause swelling or pain."
Though most common among African American families, Badger tells me she never knew how serious the illness was.
"Seeing as sickle cell is most common in Black and Brown communities, I'm wondering, why didn't I know anything about it?" Badger said.
Despite the illness, Cai is just like any other kid. She enjoys her trampoline and playing basketball. But what makes her special is her courage.
"It's hard to go back and forth to the hospital every day, every month, or every week," Stoudemire said.
Badger says she's learned a lot from her daughter Cai.
"I've learned to face things head-on," Badger said. "Even though you are scared, don't shy away. Face it head-on, and everything will be okay."
Cai's resilience inspired the book, and her hope is to help other families.
"'V' is for Victorious. We sickle cell warriors are victorious in our fight every day," Badger said. "The most important thing to me was representation of having characters that look like Cai and the book being from her point of view."
For Cai's birthday, the Make-A-Wish Foundation granted a special request. Cai's wish was to swim with dolphins.
"We took pictures with the dolphins. We got to feed the dolphins. My aunt and my mom were like, 'Let them be free!" Stoudemire exclaimed.
Children's Hospital also bought copies of Cai's book to help other families of color better understand the illness.
"In the beginning of the hospital visits, I was given informational pamphlets, but nothing that resonated," Badger said. "The research is out there, but it's always from a medical standpoint, it's never from the patient's point of view."
Stoudemire's journey has not been easy. She has experienced unimaginable pain and countless visits to the hospital.
"You don't have to be afraid about it or sad about it. And your family is praying about you coming home," Stoudemire said. Even when you have to take medicine, it will help you get better." Very wise advice from a 10-year-old who is already planning her next book.
To purchase Cai's book, click here.
If you'd like to follow her journey, you can visit her Facebook page.
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