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.
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SOURCE Make-A-Wish Foundation of America