From struggle to success: A family's story with SCID

Erica Billy and her husband Terrance George watched with worried hearts as their newborn daughter Ava battled constant infections. As the months passed, trips to the pediatrician and rounds of antibiotics became a regular occurrence. Still, Ava’s health deteriorated.

Ava became so ill that when she was five months old Erica and Terrance took their feverish and lethargic daughter to an emergency room in Phoenix, Arizona, where doctors immediately hospitalized her. Ava had low oxygen levels, a high heart rate, bronchitis, and several viruses. A week later, doctors admitted they still didn’t know why Ava wasn’t responding to treatment.

“She looked like she was shutting down,” said Erica.

Finally, they concluded Ava had leukemia. Erica and Terrance sought a second opinion.

Upon the recommendation of Terrance’s mother, the couple contacted Dr. Diana Hu, the chief clinical consultant in pediatrics for the Navajo Area Indian Health Services. Hu diagnosed Ava with Artemis SCID, a form of SCID more prevalent in the Navajo Nation than in the wider population.

SCID, or severe combined immunodeficiency, is the most life-threatening of all the primary immunodeficiencies. A baby with SCID has no functioning immune system and is vulnerable to all types of infections. Without treatment within the first few months, a baby with SCID may not live past the first year of life.

“We thought we would lose her at that time. I felt like we took the right steps at the right time,” said Erica.

The story of Ava’s harrowing journey through SCID diagnosis and treatment, and her slow but sure recovery, served as the opening portion for IDF’s Virtual SCID Summit held April 1. The Summit brought together parents, physicians, state laboratory and newborn screening professionals, non-profit research representatives, and advocacy groups to share information about topics pertaining to SCID.

As the first speaker at the Summit, Erica described her daughter’s lifesaving hematopoietic stem cell transplant (HSCT) at the University of California, San Francisco Benioff Children’s Hospital, and her struggle with graft versus host disease, a complication in which the donated cells attack the existing cells in the recipient.

After spending seven months in the hospital and three months at an apartment nearby the hospital, Ava was strong enough to return home.

“It felt like we were taking home a newborn again,” said Erica.

While Ava required a second HSTC as a toddler, with her mom donating stem cells for both procedures, today she a thriving 6-year-old with lots of friends in her kindergarten class. She is at the top of her class and recently won the Principal’s Award.

Erica shared her story virtually from a room at UCSF Benioff Children’s Hospital, where she is caring for her second child, Camden, born in with Artemis SCID in December 2019. Camden is being treated with gene therapy.

Please take the time to listen to Erica’s story, an emotional recollection of both the difficult times and the triumphs of being a mom to children with SCID. You may reach the story through this link: https://www.youtube.com/watch?v=bhzPjOHpYmk&amp=&feature=youtu.be