Sometimes during early pregnancy, a baby's heart fails to form properly, resulting in structural abnormalities known as Congenital Heart Defects (CHD). CHD is considered to be the most common birth defect, and is a leading cause of birth-defect related deaths worldwide. Despite the fact that CHD affects approximately 1.8 millions families in the U.S., a relatively small amount of funding is currently available for parent/patient educational services, research, and support.
A national voluntary health organization uniting parents, caregivers and researchers nationwide with government, business and community service groups to advance infant health and survival.
At the age of 10, Taylor Harbin was diligently working toward a three year goal of Black Belt in Tae Kwon Do. He began complaining of aches and pains in his joints which his parents attributed to the many hours of practice. As time progressed, he began to refuse his little brother’s request to go outside and play. Eventually the pain progressed until he could not get out of bed by himself. Read more here...
At the age of 10, Taylor Harbin was diligently working toward a three year goal of Black Belt in Tae Kwon Do. He began complaining of aches and pains in his joints which his parents attributed to the many hours of practice. As time progressed, he began to refuse his little brother’s request to go outside and play. Eventually the pain progressed until he could not get out of bed by himself. At the end of the year fairly severe pain in his arms caused his parents to take him to their pediatrician. He was referred to a pediatric rheumatologist and diagnosed with polyarticular juvenile rheumatoid arthritis.
It took about three years of balancing the severe side effects against the effectiveness of the medications before the optimal regimen was achieved. Currently, Taylor takes three injections per week and according to him a “plate full of pills” each day. He has required extensive physical and occupational therapy as well as on going lab tests. Taylor lives in a rural area of Kentucky and travels about 5 ½ hours to Cincinnati to see a pediatric rheumatologist (unavailable where he lives). The effects of the disease and its treatment have altered his ability to participate in many physical activities he had previously enjoyed including baseball and Tae Kwon Do.
Now 18, Taylor is a very accepting young man and rarely complains about the many symptoms and inconveniences that accompany this disease. His positive attitude is one of hope and perseverance. He and his family have demonstrated their unending concern and desire to make a difference by serving as volunteers and advocates to the Arthritis Foundation since his diagnosis.
The Harbin family was new to the world of advocacy and unsure of how their voice could impact the decision makers in Washington, DC at the 2005 Arthritis Advocacy Summit. One of their assignments for the Ohio River Valley Chapter of the Arthritis Foundation was to visit Representative Edward Whitfield(R), a member of the House Appropriations Committee from Kentucky to ask for his support of the Arthritis Prevention, Control and Cure Act. Their trip was funded from an Arthritis Foundation family scholarship with hopes high that they could make a difference.
Upon returning home, Mrs. Harbin made follow-up calls to everyone they had visited in conjunction with a local newspaper article about Taylor and his Washington trip. Congressman Ed Whitfield’s office called back to tell her that he was going to sign on the bill. Why? I will quote the
Congressman’s assistant, “Your child told us his story and it made a real difference for us.” Remember, one individual can still make a significant difference!
Sometimes during early pregnancy, a baby's heart fails to form properly, resulting in structural abnormalities known as Congenital Heart Defects (CHD). CHD is considered to be the most common birth defect, and is a leading cause of birth-defect related deaths worldwide. Despite the fact that CHD affects approximately 1.8 millions families in the U.S., a relatively small amount of funding is currently available for parent/patient educational services, research, and support. 
At the age of 10, Taylor Harbin was diligently working toward a three year goal of Black Belt in Tae Kwon Do. He began complaining of aches and pains in his joints which his parents attributed to the many hours of practice. As time progressed, he began to refuse his little brother’s request to go outside and play. Eventually the pain progressed until he could not get out of bed by himself. At the end of the year fairly severe pain in his arms caused his parents to take him to their pediatrician. He was referred to a pediatric rheumatologist and diagnosed with polyarticular juvenile rheumatoid arthritis. 
