Jakob Guziak has so-called ‘bubble boy’ syndrome in which he has no immune system. Now, the Edmonton child is taking part in a clinical trial south of the border that his family says could be a cure. Quinn Ohler has more in Health Matters.In August 2019, when he was just 10 days old, Jakob was diagnosed with ACA SCID or severe combined immunodeficiency.
In early May, the family will be heading to UCLA in California to take part in a stem cell treatment trial.“They will take Jakob’s cells they will transform those cells with a virus,” said Jakob’s mom, Andrea Fernandez. “They will put those cells back into his body after chemotherapy.”Health Matters: Despite devastating health conditions, Alberta ‘bubble boy disease’ family helping others
“There’s costly barriers not only to the families, like travel costs, but of taking care of others back home,” said Breanne Steward from RareKids-CAN, referencing some of the things families face when they are heading out of the country for treatment.