When my oldest son, Julio Jr., was 7, strange things started happening. He was getting pale. Odd bruises appeared on his body. His chest hurt. In March 2013, we took him in for a CT scan and blood tests, which came out normal. It was “due to football” they told us.
I said, “That doesn’t make sense. Junior’s been playing football and soccer since age 4.” I was a medical assistant at Fountain Valley Clinic at the time. I knew something was wrong.
After getting a root canal a month later, he passed out, was in and out of consciousness, and had nonstop bleeding. New tests found that his hemoglobin and platelet levels were dangerously low. “We don’t even know how he is alive,” they said. He had aplastic anemia—a rare condition where the bone marrow doesn’t produce any blood cells anymore—red ones, white ones, or platelets. Ahead of Junior was a life of fatigue, uncontrolled bleeding, and life-threatening infections. Someone’s sneeze could kill him.
There are treatments for aplastic anemia but only one cure: a bone marrow transfusion from a perfect-match donor. Junior has a rare blood type, and when they ran his numbers in the National Bone Marrow registry there were no matches. They tested me and my husband and my other son—no matches.
Suddenly, our lives were changed. Junior spent 2½ months at CHOC getting treatment, then had to be isolated for a year. He couldn’t go outside because his immune system was zero. He had to rebuild it with a special treatment and more than 40 blood transfusions. I had to quit work. We were prisoners inside the house. It was like “The Boy in the Plastic Bubble.”
Money got really tight. Fortunately, last May we got help from Miracles for Kids (a nonprofit that gives financial aid to families of kids with life-threatening illnesses) and moved into Miracle Manor, an Orange apartment complex less than 2 miles from CHOC. It costs less than half of market price. We can stay here three years, but we might only need half that.
That’s because we got another miracle; another baby—unplanned! Gloria is 18 months old now; they tested her when she was 2 months, and she’s a perfect bone marrow match!
Now we’re just waiting for her to be big enough for a transplant. They think by age 2½ or 3 she’ll be ready to donate. They need to take a whole liter of bone marrow out of Gloria’s body, and she doesn’t even have half a liter yet. When we do it, she’ll be fine; it’ll grow back in two weeks.
Junior can hang on for a while—he’s back in school half-time, taking 12 pills per day and wearing a mask. Being here at Miracle Manor with other kids in similar circumstances makes him feel normal. They don’t judge him and don’t ask, “What’s with the mask and the bruises?”
For now, this is as good as we can get. We even joke about it. A perfect baby. An inexpensive place to stay. In a couple of years, I’ll be back to work and he’ll be a normal kid.