An advocate for others

Published 10:19 pm Thursday, January 16, 2020

Ayana Johnson is only 13 years old, but she’s already an incredible advocate for herself and others.

Ayana has sickle cell disease, and she uses her passion for competing in pageants to bring attention to it. Her platform is called “Ayana’s READ Initiative: “Readiness to Empower, Advocate and diminish hopelessness in chronic Disease,” and she enjoys raising money for the Children’s Miracle Network hospitals.

While healthy red blood cells are round and move through small blood vessels to carry oxygen throughout the body, people with sickle cell disease have red blood cells that become hard, sticky and C-shaped — like the shape of a sickle. They die early, causing a constant shortage of red blood cells, and get clogged in smaller blood vessels, causing pain, infections and serious conditions like stroke or organ failure.

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Sickle cell disease primarily affects African Americans and is not well known outside of that community. Increased attention on this and similar diseases could lead to more advocacy and research to aid sufferers.

Ayana not only competes in pageants but also dances, volunteers for many different hospitals and organizations and creates Ayana’s Hope Cells, heart-shaped pillows with smiling faces that she donates to patients.

She also plays the violin in the Col. Fred Cherry Middle School orchestra and is a member of the school’s Ladies of Distinction club, plus the National Beta Club. Her community service included volunteering in the soup kitchen and food pantry at her church in Newport News, St. Vincent de Paul Catholic Church; speeches she gave for Sickle Cell Association fundraising; and volunteering with the Suffolk Sheriff’s Office at last year’s National Night Out, and their Back to School drive in September. She also helped raise $1,500 toward relief efforts for those in the Bahamas that were devastated by Hurricane Dorian last year.

When someone with a disease can not only overcome it personally but also use their experience to advocate for others, that’s when they’ve truly won. Ayana is going above and beyond that with all of her other volunteerism as well.

We applaud Ayana for advocating for those with sickle cell disease and other chronic illnesses.