Most Americans will become caregivers at some point in their lives. Approximately 66% of family caregivers are women. The typical caregiver is married and employed, with children under the age of 18 at home. It's no surprise that many caregivers find themselves burning the candle at both ends, as they juggle work and parental responsibilities with their caregiving duties.
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 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 ˝ 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!