In September 2020, Joseph was diagnosed with a rare genetic immune deficiency disorder called Chronic Granulomatous Disease. Joseph’s white blood cells were unable to fight off bacterial or fungal infections, and his life expectancy if left untreated is 15-25 years. While the disorder is deadly, there is a 100% cure for it: a bone marrow transplant. If successful, a bone marrow transplant will give Joseph the ability to live a completely healthy life. Joseph was able to receive a bone marrow transplant from a perfect match unrelated donor on 1/29/2021, and he was in the hospital for just shy of 6 weeks in the transplant unit. Joseph’s donor cells did engraft, but for about a year afterwards, Joseph goes through a very delicate recovery phase including medications that suppress his immune system, blood transfusions, and constant monitoring. After undergoing the chemotherapy prior to the transplant, it also takes quite a bit of time for Joseph’s body to heal, leaving his immune system susceptible to infections and viruses. It is quite a long process!
Joseph had to be readmitted to the hospital after he began fighting a virus called adenovirus that had been reactivated by his chemo. While this virus is like a “common cold” for kids, it can be quite scary for a child who is post-transplant. Joseph is currently intubated for the third time, and is fighting the virus while on a ventilator. Our little boy is a tough little boy, and we know that he will continue to fight off this virus!