Photograph courtesy of Rick Guidotti of

Photograph courtesy of Rick Guidotti of
18p- Families  

Claudia Traa, Executive Director - Her Story  Print  

My name is Claudia Traa. I was born in West Islip, New York where I lived until I went away to college. I attended The Catholic University of America and graduated with a B.A. in Political Science in 1988. During my last year at school, I met my husband Jim Traa, who graduated the same year from The United States Naval Academy. We were married two years after we graduated. I worked as a paralegal for about seven years. Jim served in the Navy as a Supply officer for nine years. During that time, in September 1995, our son Ross was born in Pensacola, Florida. We were and are extremely proud parents. Our life changed tremendously in that first year, but if given the chance, we wouldn't change a thing.

On Ross' first day of life he was diagnosed with a congenital heart defect called "Tetralogy of Fallot." He was flown from Pensacola Naval Hospital to University of Alabama Medical School for surgery. His surgeon, Dr. Albert Pacifico, is one of the best. On day ten, Ross had a BT shunt put in that basically would allow oxygenated blood to flow to his body. He did well and at six months underwent open heart surgery to correct the defect. In the interim, we learned that what Ross had was a result of a chromosomal abnormality called 18p-.

After searching for answers, we happened upon an organization that once again would change our lives forever. The Chromosome 18 Registry & Research Society would help us realize we were not alone and there was help and hope. They sent us educational materials and we learned areas we needed to watch with respect to our son's health and wellbeing. We in turn had to help inform and educate our son's doctors, as many never had a patient with his syndrome.

Prompted by what we had learned, we sought experts and over the next year found out that in addition to his heart defect, he also had vision problems and would need glasses. Ross had imbalanced far-sightedness that required him to wear glasses, and we needed to patch one eye. This would help strengthen the weaker eye and train him to use both eyes equally. Ross continued to progress developmentally. He received physical therapy through early intervention. Thankfully, he didn't qualify for much else. He never crawled very much, but managed to get around by rolling. We attributed much of this to discomfort from his open heart surgery. He walked at fourteen months. He pointed to things, smiled, and understood what we said to him. One thing he wasn't doing was showing normal signs of emerging language. He wasn't making the babbling sounds I heard other children making. Since I knew this was a common characteristic among chromosome 18 anomalies, I was able to get his speech tested, and he qualified for speech therapy.

When Ross was eighteen months old, his sister Kendall was born. She was a gift to us and to Ross. They teach each other, push each other and play together. One amusing aside is that while I was making up a lot of excuses why Ross didn't walk until fourteen, his sister, who had no surgery or chromosomal issues, didn't walk until fifteen months. I think they will always look out for one another, and that makes Jim and me very, very happy.

Shortly after Kendall was born, Jim got out of the Navy and dove head first into civilian life. Jim chose a sales job with Genzyme Surgical Products. Of the territories they offered him, which included many with cold, wet climates, San Antonio stood out like a jewel among them. Although neither of us had lived in Texas nor had any family there, it seemed to somehow be right for us. After finalizing our decision, I remembered the Registry was in Texas, but exactly where I could not remember. As fate would have it, we ended up in San Antonio, home base of The Registry. I was thrilled to meet Gloria and Jannine and see the labs at The Health Science Center where the research was conducted.

After we settled in, I began doing some volunteer work for The Registry. After I was here for two years, Jannine asked me to chair the 2000 conference, which I agreed to do. Shortly after that she approached me with the position of Executive Director. Now my part-time responsibilities include fund-raising and media relations. I am so thrilled to share my time and effort with something so dear to me. I am passionate about the work I am doing and that is a career goal many spend years trying to realize. We also have another daughter, Brenna, who was born in 2001.  I know our family is now complete and is exactly the way it is supposed to be.  I feel blessed my son is doing well and that I am able to work for the Registry and assist in the area of development, an area so vital to any non-profit organization.


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