Bella Bevilacqua, Age 10, from Lakemore, Ohio
Sidekicks: Sister, Sophia, her mom, her dog, Brandi, nurse Laura, Nicole and Becky
When she’s not busy overcoming obstacles: Bella enjoys playing volleyball, tumbling, swimming, cheerleading and participating in the CAVs No Limit Dance Team.
Did you know fact: Bella has never lost a baby tooth at home. She always loses them in other places – airplane, car, baseball game, friends’ houses, school and restaurants.
Why Bella is a #ACHero: Active and witty Bella Bevilacqua suffers from a low immune system, but she doesn’t let it keep her spirit down. She works to stay healthy by following her health plan and participating in sports, as well as giving and receiving full doses of laughter thanks to her comedic personality and sweet disposition.
Bella’s Story: When you’re a twin, you share a lot with your sibling – birthdays, toys and friends – but for Bella Bevilacqua, she also shared the struggle of being a premature baby with her younger (by 30 seconds) sister. At 26 weeks premature, she shared a ‘room’ at Akron Children’s neonatal intensive care unit (NICU) where both girls learned to breathe, feed and grow on their own.
Three months later, Bella graduated from the NICU and came home on her actual due date. She was growing and achieving her developmental milestones, but her parents worried that she seemed to get sick, and stay sick, a lot. Her sniffles would quickly turn into ear infections and then a respiratory infection or bronchitis. Just before kindergarten, Bella had pneumonia 3 times in just 4 months.
“We learned that when Bella gets a cold, it’s a slippery slope,” said mom, Kirsten Bevilacqua. “Her condition can get bad quickly. We give her over-the-counter and prescription medications but, often, it’s too little too late so we have to bring her to Children’s to get her on IV (intravenous) antibiotics.”
After relentless ear infections, Bella underwent ear tube surgery – twice – in both ears to help relieve pressure and lessen the frequency. Then, at age 5, Bella had an incredibly bad bout of illness that required antibiotics for more than a month to keep it from worsening. Once off the medication, she got C. difficile infection and colitis.
Soon after, Akron Children’s pediatric pulmonologist, Dr. Heather Strawbridge tested the level of immunoglobulins, or antibodies, in Bella’s blood. The results revealed she was born with primary immunodeficiency, which prevents her body from defending itself against bacteria, viruses and parasites.
Since age 6, Bella has gone to Showers Family Center for Childhood Cancer and Blood Disorders for infusions every 4 weeks. The intravenous medication she receives helps strengthen her body’s immune system to lower the risk of infection.
“Dr. (Ravi) Karnani, who is her immunologist, is hoping she’ll grow out of it (immunodeficiency), but she may have to receive treatment for the rest of her life to keep her protected,” said Kirsten.
Despite the monthly needle poking for treatment, Bella is strong and doesn’t complain about coming to the infusion center.
“It’s become such a regular part of Bella’s life, it’s kind of like coming in to visit her family…The nurses are all so good with her. Bella knows her nurses by name and they all know her routine and adhere to it without me having to ask, which is so nice,” said mom. “I hold Bella’s head against my chest, she squeezes her blankie, we close our eyes and count to 3, the nurses do their thing and then we wait 3-4 hours until her treatment is done. It seems routine, but knowing what to expect makes a big difference in Bella’s ongoing care.”
In the midst of caring for her low immune system, Bella complained one evening that she had a stomach ache. The pain worsened through the night so her mom brought her to Akron’s emergency department. An X-ray revealed she had appendicitis.
“The surgeons were shocked at our laid back reaction of the news, but we’ve been through so much with Bella and Sophia that it was nothing to hear she had to have her appendix removed…she was at Children’s so we knew she was in great hands and would be okay.”
Bella did make a full recovery from her appendix surgery and continues with her immune system treatment today to help keep her healthy and active.