In honor of National Patient Recognition Week, we’re delighted to share our next patient spotlight with the Cowell brothers, 7-year-old twins living with XLA (X-linked agammaglobulinemia). The brothers were diagnosed at 11 months old and receive weekly SCIG infusions at home. We hope you’re inspired by their positivity!
How and when were you diagnosed?
We are 7-year-old twins living with X-linked agammaglobulinemia (XLA). We were diagnosed after an almost fatal infection at 11 months old. We get weekly SCIG infusions at home and love to play football!
How has treatment impacted your life?
Our weekly Sub-Q treatment allows us to remain relatively healthy. We still get infections, so we are also on prophylactic antibiotics daily. Our Immunologist, pulmonologist, and infectious disease specialists team up with our mom to make sure our treatments are the best for us!
Why did you decide to start your Instagram page and share your story?
My mom shares our story on Instagram and Facebook to continue to spread awareness for PI. We also raised money for the walk for PI. If our story can help anyone else in the PI community then we have done our job.
Is there anything else you’d like to share with our community?
We know what it’s like living with an invisible illness, so we like to share our story and spread awareness to help others like us in the PI community. We want other kids to know that they can have a full and normal life too.