Five-year-old battling a critical illness helps spread awareness about sickle cell disease

PHOENIX, June 19, 2021 /PRNewswire/ -- Amina is your typical 5-year-old. She loves to play with her friends and can't imagine a world without princesses and fairy tales.

"Dressing up like a princess makes me happy!" Amina said. 

But while most 5-year-olds spend summers at the pool and the playground, Amina spent most of her days inside a doctor's office and away from her friends.

"She would always ask, "why do I have this?'" said Queena, Amina's mother.

When Amina was only a few days old, she was diagnosed with sickle cell disease (SCD) – a genetic red blood cell disorder affecting hemoglobin. This molecule transfers the protein that carries oxygen through the body.

"Normally, red blood cells are disc-shaped and flexible and move easily through the blood vessels," says Dr. Tammuella Chrisentery-Singleton, director of pediatric hematology at the Mississippi Center for Advanced Medicine and member of the Make-A-Wish^® National Medical Advisory Council. "If you have sickle cell disease, your red blood cells are crescent or 'sickle' shaped. These cells do not bend and can block blood flow to the rest of your body."

Dr. Singleton says it can lead to severe pain and life-threatening problems, including stroke, infection, and damage to the heart, lungs, or kidneys.

According to the Centers for Disease Control and Prevention (CDC), sickle cell disease currently affects approximately 100,000 people in the U.S. – predominantly certain ethnic groups. It is estimated that 1 in 12 African Americans carries a sickle cell gene.

"A blood and bone marrow transplant is currently the only cure for sickle cell disease," Dr. Singleton said.

For Amina, that meant giving up much of her early childhood for countless treatments to help manage the symptoms of the disease that caused severe pain in her legs, making it difficult to walk at times and leading to several ER visits.

"It was shocking," Queena said. "It was a really trying time, and you're still understanding and learning as she grows."

Amina's diagnosis qualified her for a wish through Make-A-Wish, a nonprofit organization that creates life-changing wishes for children with critical illnesses. Individual donors and corporate sponsors join forces with 59 chapters and more than 30,000 volunteers to bring hope to children who need it most. Since its inception, Make-A-Wish has granted more than 340,000 wishes to kids like Amina.

"Wishes have the power to help a child replace fear with confidence, sadness with joy, and anxiety with hope," said Richard K. Davis, president, and CEO of Make-A-Wish America. "They reassure us that we don't need to wait for hope, we can create it."

Amina wished to have a princess-themed birthday party at a Build-A-Bear Workshop. Make-A-Wish Metro New York worked with Build-A-Bear to make her wish a reality. As a national partner of Make-A-Wish, Build-A-Bear has raised more than $1.5 million for the organization to date, helping to grant more than 400 wishes.

Queena says the wish allowed Amina to have fun with her friends and be a carefree child – something the family doesn't take for granted. As a parting gift, Amina wanted everyone to feel as special as she did. Each party guest was able to leave with a toy of their own.

"I had the best birthday ever!" Amina said.

Research shows that a wish can help improve a child's emotional and physical quality of life, giving them a better chance of recovering. With this knowledge, some health care providers use the wish as an essential part of medical treatment for children with critical illnesses. That's why the Make-A-Wish National Medical Advisory Council, comprised of 19 of the nation's leading pediatric doctors, recently reviewed and expanded the medical eligibility criteria for children with sickle cell disease. The new changes will take effect immediately and allow the nonprofit to deliver the hope and joy that comes with a wish to even more children battling sickle cell disease.

As for Amina, she will be celebrating another milestone just in time for World Sickle Cell Day on June 19 – her birthday – and she's making awareness part of her birthday wish. For years, the family has been an advocate for the cause, even creating a YouTube channel to teach others about the disease that changed Amina's life forever.

"Allowing [Amina] to speak up and question for herself gave her the confidence to talk about it with the doctors, around family, or in school," she said. "It's what I'm so proud of."

If you want to help your local chapter or find out how to refer a child battling sickle cell disease for a life-changing wish, visit wish.org. 

SOURCE Make-A-Wish Foundation of America