Amina's Best Birthday Ever
“She would always ask, ‘Why?’ said wish mom Queena. “‘Why am I having this?’ ‘Are they having the same thing?’ ‘Why don’t you have sickle cell?’”
When she was just days old, her mother found out that Amina had sickle cell disease - 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, and a blood and bone marrow transplant is currently the only cure.
While Queena knew that she was a carrier of the trait, she never knew much about the condition and how it manifested.
“It was shocking,” she said. “Up until about 3 years old it was a really trying time. You’re still understanding and learning as she grows.”
She was quickly thrown into an unfamiliar world of pain crises and emergency room visits. “Being new to the whole thing, it became trying to figure out, ‘Is this cry for pain or for something else?’” Queena said. For Amina, the disease causes severe pain in her legs, at times making it extremely difficult for her to walk.
When Amina eventually started talking, the questioning about her illness began.
“I always wanted to give her the best answer that I could,” said her mom, explaining that she thinks this is part of the reason why Amina is so outspoken about her condition today. “Allowing her 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.”
But for Queena, Amina’s illness quickly became a mental strain. While she had support from her family, she needed more. When she couldn’t find what she was looking for at the hospital, she branched out on her own to find new resources and grow her own community. “If I’m going through these feelings, I know someone else is too,” she said.
When Amina started taking a liking for YouTube, Queena couldn’t believe that she hadn’t turned to social media in the past. “It was Amina’s idea actually to start our channel,” she said. On their family page, It’s Amina K, the duo focuses on spreading advocacy, teaching healthy habits, and encouraging others in whatever battles they are facing.
From workout videos to cooking, Amina tries it all on her page. The silver lining of her illness is that everyone in their family has embraced a healthy living mindset. “I think she’ll do great in the future, being confident with herself and knowing that she’s not alone,” said mom.
In fact, their whole community has come together to support her and to give back. To this day, Amina’s favorite time of year is the holiday toy drive they started within their “Sickle Cell Support Circle.” For two years now, they have collected toys and funds to give to their local hospital for the little warriors to take home.
Amina has taken this philanthropic mindset into her wish as well. Although she knew she wanted a birthday party, she didn’t want to make the day all about her. Whenever she dresses up as a princess, she feels special and wanted to give her friends that feeling too, so she chose to have a princess themed party at Build-A-Bear Workshop. 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.
The night before her wish, though, Amina faced another pain crisis, and woke up crying in the middle of the night. But on the day of her wish, she was all smiles.
“I held back tears because we almost had a very different kind of day,” Queena said.
Amina and her friends gathered at the Workshop to live their princess dreams, build the toy of their choice, and even have a pose-off! The birthday girl herself chose to dress as her absolute favorite princes – Ariel.
And of course, she wants to make time for a little advocacy in her day too. She and her friends posed for photos with sickle cell awareness frames and urged her friends to learn more. “It feels good. I’m proud of myself,” said the princess herself. “I had the best birthday ever!”
Queena said the wish allowed Amina to have fun with her friends and be a carefree child – something the family doesn’t take for granted.
While Amina faces a lifetime of monitoring her condition, her family is thankful that the number of hospitalizations has subsided in the past two years and that her wish day gave her a reprieve and happy memories.
“I have cried, prayed, screamed, been exhausted, spoke up, educated myself, educated others, questioned, wondered, researched, advocated, understood, misunderstood, backed down, became aware, and taught awareness… and there will still be these moments to come.”” said Queena. “Thank you for making this a memory of a lifetime. I held back tears today.”
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.