Brett's Story 

When Brett was born, the pediatrician heard a heart murmur. He was sent to a cardiologist who diagnosed him with Tetrology of Fallot, a heart defect that causes low oxygen levels in the blood, which can lead to bluish-purple coloration of the skin (cyanosis). We were blessed because Brett was actually born a “pink tet” baby and looked perfectly normal. If it had not been for the doctor’s diagnosis, we would have never known Brett’s condition until his symptoms showed later in life. 

At first, all I could think was that Brett was not “normal.” He was labeled a “heart kid,” a child who is not perfect. At three months, he had open heart surgery and has had additional surgeries for his pacemakers.

It breaks your heart to see your child in pain—both physically and emotionally. The procedures he goes through are painful ones. People often ask, “Will he have surgeries his whole life?” as though Brett is not standing there in front of them.

Finances are an added stress. The issue of insurance is just devastating. Although my family has a small business, I had to take a second full-time job just for the benefits.

Despite everything, the situation my family faces together day in and day out has proven to not be completely negative. Time has brought us a better understanding of Brett’s condition and how to cope with it.  Our eldest son Jake, who was four at the time of his brother’s birth, no longer wallows in “Little’s Brett’s” sickness and has become his protector.

Another positive in all of this is that God has placed many special people in our path — such as those from Starlight Children’s Foundation.

I learned about Starlight from another family who was already involved in its programs. They couldn’t say enough great things about the organization. Starlight has really proven to be a shining light and, in many cases, the only good associated with Brett’s illness. I always tell my son we are very thankful for him, as he is the one who allows us to have Starlight in our lives and gets us invited to fun events we experience as a family!

We try to participate in as many of Starlight’s Great Escapes events as we can. We have been to Braves games, Falcons games, Christmas parties and picnics. Roshni, our Starlight Great Escapes coordinator, plans the most fun activities and always caters to the kids. She is a true angel and is one of the kindest people we have ever met. At these events, while my husband and I are interacting with other parents who are going through similar situations, I always take a step back to watch Brett move happily around on his own. It proves to me over and over again that my child really is normal. He is a kid with a great heart. He is perfect. And it makes me feel so blessed.

We are very thankful for everything Starlight has done for our family. Many thanks to its staff and to the corporations and individuals who sponsor Starlight and help make it all possible. It is such a wonderful program…

-Carlie Jo, Starlight Mother