SUFFOLK, Va. (WAVY) – A 13-year-old Suffolk resident is on a mission to raise awareness about sickle cell disease.
Ayana Johnson has been in and out of hospitals since she was diagnosed with the disease as a baby. She recently made a special delivery to Children’s Hospital of the King’s Daughters (CHKD) to spread some love to other kids and teens with the disease.
Johnson was diagnosed with sickle cell disease when she was a baby. The first pain crisis she remembers is from when she was just five years old.
“It was really traumatizing for me and it was hard for me to cope with it at first,” Johnson said.
Sickle cell disease affects red blood cells, making them sickle shaped instead of round.
“It sucks when I can’t get up and move,” Johnson said. “It feels different for everyone, but for me, it feels kind of like glass shattering. Sometimes it can be in my legs, maybe even my ankles, my knees and my arms.”
Ayana makes multiple trips to the hospital every year, but she’s never alone. She has her family and her comfort object.
“It’s this little teddy bear and I named her Coco,” she said. “I’ve had her ever since I was born, I think, so I always take her to the hospital and I feel like she’s really something that gets me through my pain crises.”
That’s why Johnson brought comfort items, called “Ayana’s Hope Cells,” to CHKD. She designed the heart-shaped pillows for other kids and teens in the hospital who are also battling sickle cell disease.
Johnson said, “I also have little cards for them that I put in here. This one says ‘Taco about amazing’ and it says ‘Bringing you comfort and joy. Love, Ayana J.'”
CHKD Child Life Specialist Kaitlynn Lewis says she wasn’t surprised when Ayana came to her with this idea.
“When she called me in to tell me her idea, she was really excited to make this happen, especially for sickle cell patients,” Lewis said, “she specifically wanted these pillows to go to patients that were being admitted.”
Lewis says the pillows will mean a lot. “To have an actual patient, that really gets what they’re going through, to come through and provide this, even though it’s a simple thing, it’s a heart pillow, to a patient that’s in a pain crisis or maybe this is their first hospitalization ever, it’s really overwhelming,” said Lewis. “Just having that comfort item to help them through is really important and meaningful.”
For Johnson, it’s not just about the pillows. She wants to educate people about the disease and empower those who are living with it.
“Do what you want to do and do what you love and don’t think about your disease defining you,” Johnson said.
Wise words from a 13-year-old who is letting nothing get in her way.
“I just had to take it upon myself to say ‘Well this is what I have. God gave it to me because he knew I could handle it’,” said Johnson.
If you’d like to help, contact that family at firstname.lastname@example.org.