From the time she was born, this Indianapolis woman was a patient at Riley Hospital for Children and now IU Health Simon Cancer Center. Her diagnosis - Sickle cell disease - is something she’ll navigate the rest of her life.
By TJ Banes, IU Health Senior Journalist, firstname.lastname@example.org
“Riley Hospital became our second home,” said Avery Hubbard’s mother, Tami Hubbard. During a monthly visit to IU Health Simon Cancer Center, Tami Hubbard kept her daughter company as she received an infusion treatment.
It’s a practice the mother and daughter have grown accustomed to. While nurse Bridget Christison administered treatments, Avery and her mother talked about Avery’s life with Sickle cell. A group of inherited red blood cell disorders, Sickle cell disease can cause severe pain and fatigue. The chronic condition usually results in numerous hospital visits to help manage pain and complications.
Avery was born in Charleston, SC, 31 years ago. Her family moved to Indianapolis when she was two and she became a patient of Riley Hospital until she reached adulthood. She graduated from Lawrence North High School and attended Winston-Salem State University where she studied micro-biology. Since 2019 she has worked at IU Health in the path lab.
“Growing up with Sickle cell and spending a lot of time in the hospital, I wanted to have an impact on others. I didn’t have the stomach for nursing but I knew I could make a difference by working on a diagnosis,” said Avery.
Avery was diagnosed at birth through a newborn screening. Her mother said that both she and her husband had the Sickle cell trait so they talked to doctors before deciding to have children. “My doctor said you have a greater chance of having a child without the disease than having one with it,” said Tami Hubbard. She has an older daughter who also carries the trait. When Avery was diagnosed, she became a regular patient at Riley Hospital.
“I felt like I knew Riley Hospital backwards and forwards. When she was in the hospital, I was in the hospital because I stayed with her,” said Tami Hubbard. “The worst years were her adolescent years because she didn’t want to take her medicine and I had to remind her every day.”
Now, Avery controls the disease with infusions once a month and additional pain medication as needed. There have been so restrictions, but she’s learned that she will always live with the disease.
“I couldn’t run. Anytime I would run I’d end up in the hospital. That was the first major thing I realized I couldn’t do when I was younger. I also remember being invited to a birthday party and there was going to be horse back riding. I was so excited but I couldn’t go because my spleen was enlarged and it was too risky,” said Avery.
In grade school and high school she had accommodations in place. It was when she went on to college that Avery said she realized that she was on her own.
She was a competitive cheerleader throughout middle and high school. “I don’t think I every missed a competition because of Sickle cell. Sometimes I’d cheer in pain but I’d still cheer,” said Avery. She also played volleyball; she crochets and is an avid reader.
And there’s something else that keeps her busy - she’s planning a June wedding. Her fiancé is also from Indianapolis and someone she has known since high school.
“For all my life, it’s been hard to make plans because I never knew when there would be a pain crisis. I’d go to a sleepover and I’d have to go home,” said Avery. “It’s just the way it was.” When she left for college, her mother had just returned home when she got a call that Avery was in the ER all the way in North Carolina.
“As an adult I’m learning my limitations but still trying to live the best life. I’m learning how to balance work and home and now it will be marriage,” said Avery. “He’s known me long enough, he knows what he’s getting into and we’re in it together.”