The Conley family donates plasma to help those living with PI

The first time Aubrey and Jonathan Conley gave plasma, it was on their anniversary – and two days after their daughter Ava Love Aubrey Conley, 8-years-old at the time, had her first immunoglobulin (Ig) infusion as treatment for predominantly antibody deficiency, or PAD. PAD is a primary immunodeficiency which prevents Ava from making functioning antibodies. Aubrey said she and her husband didn’t think twice about donating once they learned the importance of plasma to both their daughter and others with PI.

“We found it significant to give to the cause since others gave in order for our daughter to have this life-changing opportunity,” said Aubrey. “The one thing I said is I will forever be an advocate for donating plasma.”

Aubrey admits that she and her husband had never heard of plasma donation until their daughter’s PI diagnosis. But the couple did know what it was like to care for a little girl who constantly developed infections. At just two weeks old, Ava was hospitalized for six days with RSV, a respiratory virus. After she recovered, she continued to experience multiple respiratory infections, pneumonia, bronchitis, sinus and ear infections, and fatigue. Yearly, she ended up with week-long stays at the Children’s Hospital of Philadelphia.

Doctors diagnosed Ava with chronic asthma as a toddler, and while her immunologist and pulmonologist kept a close watch on her, they didn’t test her for PI.

Two years ago, when the Conleys took a trip to Florida, Ava caught the flu, which exacerbated her chronic asthma. Respiratory distress sent Ava to the hospital several times during the trip and forced the family to drive home to Pennsylvania, instead of flying, in order to keep Ava safe.

Ava’s doctor realized then that she wasn’t going to get better with age, as he’d hoped, and sent her for testing. The PI diagnosis shocked the Conleys at first, but also provided them with an explanation as to why Ava had struggled with the recurrent infections all of her life.

“It was one of those moments when you wanted the answer, then when you got it, you were relieved in a sense, but even more scared for the road ahead,” said Aubrey.

The diagnosis also led the Conleys to attend the IDF 2019 National Conference in National Harbor, MD. The conference proved to be a turning point in coping with Ava’s PI. Her parents listened to doctors speak about PI, Ava met her best friend there (the two now infuse together over FaceTime), and Chase, Ava’s brother, made some new friends, as well.

“I’m so glad it exists and that we found something that really aligns with what our kid is going through. Unless you experience it, you really can’t align with it,” said Aubrey. “We’re happy to have the community available to us.”

Aubrey said the Ig infusions that Ava gets every seven to 10 days make her “feel like a million bucks” and give the active 10-year-old the strength she needs to participate fully in activities like horseback riding and swimming.

Over the last two years, the Conleys have donated plasma at least monthly, and sometimes as much as twice a week. “It’s very humbling to see all the people giving plasma, coming from a mom whose daughter needs that,” said Aubrey.

The Conleys have also created a website to celebrate Ava’s life and encourage people to donate plasma, as well as educate them on the process. They also use social media to spread the word about the importance of donating plasma.

Aubrey said many people have the misconception that if they donate blood, then they are donating plasma. She explains to them that the two are very different processes. She also lets them know that the first-time donation might take close to three hours because of required testing and paperwork, but that subsequent donations only take about 45 minutes.

“I feel that people hesitate to donate because they think it’s scary or hard, but we can all do hard things,” said Aubrey. “Once you are sitting in that chair donating, it’s so rewarding – especially when people can put a face to the end result, and think ‘Wow, it’s helping people like sweet Ava Love.’”