Diagnosed with the most common and severe form of sickle cell disease shortly after birth, the now 5-year-old takes an active role in her care, while simultaneously lighting up every single room she enters.
As a girlie girl who loves to dance, play with make-up and watch YouTube, you would never guess that Amari Scott lives with a chronic and often painful disease. After being diagnosed with sickle cell type SS during a routine newborn screening, she has endured multiple surgeries, procedures and regular appointments to monitor her condition and manage her pain.
Treating sickle cell disease
The managing of Amari’s disease has been a roller coaster of sorts according to her mom, Brittney Brooks.
“Her routine check-ins when it came to her traditional sickle cell care always exceeded my expectations,” explained Brittney. Physician assistant Jennifer Newlin has been treating Amari since she was first diagnosed and provides not only care for Amari, but helps guide Brittney through the process as well.
“Jennifer lets me know things upfront, but without any judgement on how I may feel about things,” shared Brittney. But that’s not all. “She is definitely my co-parent at times!”
There was some disappointment after Amari’s participation in a clinical trial for gene therapy couldn’t be completed due to some challenges during the process, but she never complained.
“She was so tough going through the surgeries and numerous visits in clinic for labs and transfusions,” explained Jennifer, but despite that setback, Amari is making great strides overall.
“She does have intermittent sickle cell pain crises which her mom often manages at home,” said Jennifer. “Pain crises are the most common complication for our sickle cell patients, and she takes a medication to improve her hemoglobin and make her red blood cells ‘happier.’ She has done well with this and is thriving.”
“A strong sickle cell warrior”
The feisty young lady who wins over everyone she encounters has many fans among our team.
“As a patient, Amari is full of spice in the best way possible,” described Lorraine Siefke, Amari’s social worker. “She is so curious and smart when it comes to her care. She is a strong sickle cell warrior, always an active participant and often educating us! Even in the hardest days, she has always brought a smile to all our faces and definitely many laughs!”
When it comes to her care, Amari tends to take charge.
“She is sassy, spunky, funny and demanding,” explained Jennifer. “She likes things to go her way and we love it. She knows what she wants.”
When Amari showed up to the 2025 Hematology/Oncology Prom in an adorable unicorn dress, the CHoR team members in the room knew it was the perfect wardrobe choice.
Dr. Jordyn Griffin helped care for Amari when she was participating in the gene therapy trial and described her attire in the best way possible.
“She is the human embodiment of her unicorn dress- bright and sparkling and loved by all!” said Dr. Griffin.
Amari’s mom is so proud of her little girl’s progress and her resilience.
“I am so proud of who Amari is becoming at such a young age,” shared mom. “She’s a strong kid that had to endure a lot in such a little amount of time being on this earth and I have no worries in the world that Amari will be successful in her lifetime.”