Beating the Odds: Our Family's Struggle with Porencephaly

After an eventful pregnancy and a normal birth, a virus at three weeks old left our son on the verge of death and us searching for answers.

Quincy, our third child and first and only son, suffers from a brain defect called porencephaly; which basically means that a cyst or cavity filled with cerebrospinal fluid developed in his brain. Quincy's condition was caused, in part, by a viral infection in his brain.
It's a terminal condition, and he wasn't expected to live long enough to go home from the hospital where he was being treated for encephalitis.

But Quincy survived and came home with his family. His older siblings are Savannah, 12, and Serena, 8. His younger sister, Amy, 2 came along a few years later.

Despite the odds, Quincy does not have a feeding tube, a Tracheotomy, or many of the other needed assistive devices that many children with his condition depend on for survival. His life expectancy varies depending on whom you talk to, so we have learned to take each day as it comes and to remember that, for every one of us, every day we are alive we are also one day closer to death.

We have worked hard to have a good family life, and we want to make life comfortable for 6-year-old Quincy.
We have done all right despite the complications of Quincy's health problems. I provide the constant attention he needs. We do not have home health nursing or respite care of any kind.
We are trying to do some balancing to make things as normal as possible. Money doesn't guarantee happiness, but having enough to meet our family's needs makes a big difference. Sometimes that is easier said than done. While we are financially "comfortable" The equipment, food, and other items Quincy needs add up and insurance pays for very little. With three other children who want to participate in sports and events, it is sometimes hard to juggle.

We are trying to make the best of our situation. The support system we have is each other; we've been together for 8 years and married 7 years. The doctors say we're a statistical anomaly; that for many other couples in the situation, divorce is common.