EVENT DATE: Nov 16, 2014
Tony Tra wrote -
Family and Friends,
As you may know, our great-grandson, grandson, son, brother, nephew, cousin, friend, Trysten Tam Tra miraculously entered the world on March 3, 2014. Prior to his birthday, Trysten was diagnosed with Complete Agenesis of the Corpus Callosum (ACC). In layman’s terms, he is missing the band of white matter connecting the two hemispheres of his brain. Also in utero, Trysten developed an arachnoid cyst that tripled in size by the time he was born. This cyst developed in the middle of his brain and placed a lot of pressure on surrounding brain tissue to the point where his doctors did not know how much of his brain was permanently damaged.
At 9 lbs. 6 oz. and 21 1/2 inches long, Trysten proved doctors wrong and bravely started his journey of surgical procedures and tests, including a ventriculoperitoneal (VP) shunt placed in his brain to help drain the cyst that will remain placed for Trysten's entire life. Today, he is a strong, healthy, and happy baby boy and joins an estimated 7 in 1,000 children that may have ACC in “learning to live with” the condition and lead successful lives.
In an effort to raise awareness and to promote education and research for this rare disorder, we are dedicating our participation in the 2014 Rock ‘n’ Roll Las Vegas Marathon and ½ Marathon to the cause. We have set a goal of raising money by the date of the race, November 16, 2014, and donating it to the National Organization of Disorders of the Corpus Callosum (NODCC). The mission of the NODCC is “to enhance the quality of life and promote opportunities for individuals with disorders of the corpus callosum and raise the profile, understanding and acceptance of these disorders through research, education, advocacy and networking.”
We hope that you will join us in raising awareness about ACC and other disorders of the corpus callosum (DCC) and supporting the NODCC in creating a community for individuals and families of individuals with DCC.
We are excited to become a part of this great community and to see Trysten and other individuals with disorders of the corpus callosum continue to defy odds.
Let’s have a great marathon!