We are delighted to share our newest patient highlight featuring brothers Maverick and AJ! Both boys were diagnosed with XLA soon after they were born, and now receive weekly SubQ infusions. Their parents are passionate about sharing their XLA journey online so that others can be diagnosed quickly. They frequently post to help spread awareness, especially during WPIW!
Please share a brief overview of your story about living with Primary Immunodeficiency.
PI wasn’t a term I knew when our journey started. It’s part of our everyday lives now and I have become so passionate about sharing our story and information to other parents so they can identify PI’s and know that there are tons of resources available and families just like theirs that are here to support them.
How and when were your children diagnosed? Which specific PI do they have?
My boys (5 & 2) have XLA. AJ (5) was diagnosed at 18 months after a whirlwind hospital stay battling meningitis and sepsis. Maverick (2) was diagnosed at 2 weeks old after genetic testing revealed I was a carrier.
How has treatment impacted you and your children’s lives? How did you decide this was the correct treatment for them?
Our boys do weekly SubQ infusions, and they provide the level of protection they need to live normal lives. We liked the idea that we could do it at home, be flexible on when/where we do it, and above all else that it provides stable protection vs peaks and valleys sometimes seen with IVIG.
Do you share your story with others online? If so, what made you decide to do so?
Yes! We’ve shared our story countless times on Facebook groups and with other parents/families as well as with Koru during world PI week. It’s important to me to share resources for faster diagnosis, why SubQ works for us, and that my kids live normal lives regardless of XLA. I have messaged with so many parents who are terrified they won’t be able to leave the house again so we try to be an example of how you can manage PI/XLA and live a regular life.
If there's anything else you'd like to share with us, please do so below.
Keep promoting JMF! My oldest was probably 2.5 when I first saw the JMF Do Something display in our local mall. I LOVE finding them and sharing them to continue the message. It’s so important for families to know they aren’t alone.