How Kioko Receives Remarkable Relief from Sickle Cell Pain
Soon after Akiko gave birth to her daughter Kioko, their doctor came with a pressing question: “Which one of you has the sickle cell anemia trait?”
Confused, Akiko responded, “I have the sickle cell trait.”
Her doctor then started talking about referring her to a different hospital.
Why was he saying these things? Akiko wondered.
Tanisha, the hospital’s sickle cell nurse practitioner, broke the news — Kioko was born with sickle cell disease, which she inherited from Akiko.
“It was really disappointing. It was horrible because I knew I had the trait.”
- Akiko, Kioko's Mom
Managing Sickle Cell Crises
Akiko started to prepare herself for what her daughter would face when she was older — chronic pain, complications — but it came sooner than expected.
At just four months old, Kioko had high fevers and wasn’t moving her leg, which led to another hospital transfer and ultimately her first blood transfusion.
Since then, as Kioko has grown up, there have been pain episodes so difficult that over-the-counter medication didn’t work, and she had to take pain medication reserved only for the most severe pain.
In those moments, when Akiko can’t do anything about taking away her daughter’s pain, she tries to find anything that can at least take Kioko's mind off it.
Resources to Cope with Sickle Cell
They’ve discovered resources at their medical facility, including toys from the Starlight Toy Deliveries program to help Kioko manage her pain.
When Kioko plays, she’s distracted and able to turn her focus to the fun activity in front of her rather than the pain she’s experiencing.
Kioko always looks forward to getting toys like her favorite LEGO sets.
“Distraction is key,” shared Akiko.
“If it wasn’t for distraction, I couldn’t imagine what it would be like to just be there. And the only thing you have to focus on is pain.”
- Akiko, Kioko's Mom
When experiencing extreme pain, Kioko was able to persevere by redirecting her focus to fun and play.
There are thousands of kids who are experiencing similar battles with chronic pain who need comfort to find relief.
Become a donor and provide sickle cell resources for kids and bring relief.
Why give? Akiko puts it best:
“Nobody should just be in pain and focus on being in pain.”
