Jude's Story

I was born on May 15th, 2021. I live with my mom, dad, and big sister (who keeps me entertained) in Alberta, Canada. I am a happy little boy with no outward indicators of disease, yet when I turned 2 months old I started presenting with blood in my stool. My pediatrician thought that it was likely just a milk protein intolerance and had my mom cut dairy and soy out of her diet. When this didn't fix my issues, my doctor investigated other possible allergens but still was not able to get my gut health to resolve. At this point a pediatric gastrointestinal (GI) specialist was brought in to help diagnose me. They thought maybe I just had an inflammatory bowel disorder and treated me with a specialized formula instead of breast milk. This seemed to help, yet my issue would not fully resolve. They decided to run more tests and right around my 5th month of life, they diagnosed me with Chronic Granulomatous Disease (CGD). CGD is a genetic condition that inhibits my neutrophils (the white blood cells that play a role in bacterial and fungal spore elimination) from functioning properly.

Having CGD means that simple activities like helping my mom out in the garden and stirring up the soil, or having fun with dad in the fall by jumping into a pile of leaves could end up with me staying in the hospital for months on end with severe and life threatening infections. Luckily my doctors diagnosed me before I had a chance to have a severe infection and are closely monitoring me for any signs. I take two strong medications each day, one an antibiotic and one an antifungal, to help reduce my risk of infection but I can still get breakthrough infections that will lead to a lifetime of extended hospital visits and reduce my longevity and quality of life. My parents are very cautious with me though, and at this point I am doing well.

A bone marrow transplant has a chance to replace my immune system with a healthy donor's and gives me the opportunity to lead a normal life like all kids deserve, free from risk of severe infection. Thanks for reading my story. It's short, but that just because I haven't been here that long!