We're excited to share AJ and Maverick's story as our latest patient spotlight! The brothers were both diagnosed with XLA and currently receive weekly SubQ infusions. Read about how their family continues to advocate in their community to educate others about rare diseases.

Please write a few sentences on your overall story living with PI.

Our family's PI journey started in 2020 with the diagnosis of our oldest, followed by that of our youngest in 2022. Since then, we've been infusing, advocating, and supporting the PI community in any way we can! Our goal has always been to share the "normal" side of PI. It's not always rainbows and sunshine but our boys are proof that with the right treatment and support, PI patients can live full and healthy lives.

How and when were you diagnosed? Which specific PI disease do you have?  

AJ was 18 months when he was diagnosed with X-Linked Agammaglobulinemia (XLA) and Maverick was 4 weeks old when he was diagnosed.

How has treatment impacted your life? How did you decide this was the correct treatment for you?  

We chose SubQ so we could keep treatments at home and on our schedule. Weekly infusions keep AJ and Maverick healthy and allow them the freedom to be kids. They have infused everywhere from the car, the park, while riding their bikes, and even while “mowing” on their tractors!

Do you share your story with others online? If so, tell us what made you decide to do so.  

Yes! When we received our oldest’s diagnosis, we were connected to some great online resources and with a gracious Mom who was willing to talk us through her PI/SubQ experiences. We’ve learned an invaluable amount from the PI community and hope that by sharing our story we can provide some comfort and support for others in the same boat!

If there's anything else you'd like to share with us, please do so below.  

Thanks to the advocacy of a rare disease family and our teachers, our school now celebrates Rare Disease Day each February. This has helped our Zebra kids feel seen and supported, while empowering them to advocate for themselves and educate others about rare diseases.