up to the challenge
sickle cell disease can’t stop Fanta from smiling
Sickle cell disease is sneaky. Although sufferers have it from birth, you usually can’t tell by looking at someone that they have this serious disease. It causes chronic pain, along with a host of other symptoms – but those symptoms are different from patient to patient. Days or weeks may go by with no pain, lulling you into a feeling of normalcy. And then suddenly a pain crisis hits with such severity, you’re hospitalized. As a child or teenager, this uncertainty and constant fear of being in pain can be exhausting, emotionally and physically.
Fanta Keita, 16, knows her sickle cell disease can try to trick her. This outgoing, joyful teenager lives her life to its very fullest in between pain crises, but some days just getting out of bed is a challenge. But Fanta? She’s up to the challenge.
“I am just not someone who is going to be sad all the time and feel sorry for myself about the circumstances that have been handed to me,” she says. “My mom says sickle cell doesn’t own me, and she’s right. I’m just going to keep on living my life.”
Sickle cell disease is a condition that causes abnormal red blood cells to form – rather than being disk-shaped, the cells are sickle-shaped, preventing them from flowing smoothly through blood vessels. The sickle cells stick together and cause blockages in the vessels, cutting off blood supply to various parts of the body, including vital organs.
For Fanta, the pain seems to affect her abdomen and back in particular. Some days, she can manage with over-the-counter medication; sometimes, taking opioids is the only way to find relief. Fanta is an excellent student and regrets that she misses a lot of school because of her pain. Sometimes, she even has to be hospitalized due to the pain and other side effects of her illness.
Last year, her disease caused a severe case of gall stones, resulting in Fanta having her gall bladder removed. That was the first time she, her brother, and her mom, Cheri, stayed in the new patient tower. Cheri says the way the new patient tower was designed makes her and her family feel truly cared for. “My favorite feature is the guest bed in each room—it’s comfortable and big enough for me and my son to sleep on when Fanta stays overnight,” she says. “And I love the new playroom and the treadmill, which gives me a chance to exercise and burn off some stress.”
A total of 1,175 donors gave more than $27 million in community gifts to build the patient tower that Fanta and Cheri so greatly appreciate. This philanthropic support was instrumental to taking the project from good to great, providing the special features that our families deserve.
“All of those details stand out to me—they show me that the hospital cares about patients and their families and understands what we are going through. The new tower is really, truly a blessing.”
With a child with life-long chronic illness – even a strong young woman like Fanta, who refuses to let her disease hold her back – blessings are exactly what the Keita family needs.