It was the middle April of 1997, about 4:30 PM, I was sitting on the couch watching the Oprah Winfrey Show. I remember I'd just erupted into a bout of laughter after listening to Oprah describe the awkwardness of the teen years, pimples, self-esteem issues and boy craziness. I had no idea that my laughter would soon turn to tears of sorrow.

The phone rang, and I received the news from my obstetrician that the child I was carrying would have sickle cell anemia. Immediately, a mixture of emotions, fear, anger and anxiety overtook me. But oddly enough, it was as though God had been preparing me all along for this moment, because as an undergraduate at University of North Florida, I completed my senior paper on sickle cell disease and butyrate research. So early on, I had a working knowledge of the disease and now the reality of it was now staring me in the face.

I was mid-way into my Masters of Public Health Program at University of South Florida, married about a year to my wonderful husband who was a public defender and supporting me through graduate school in Tampa, Florida. So this could not be happening to me. I knew that I had the sickle cell trait and my doctor automatically tested my husband and found that he was also had the trait. This meant there was a 25% chance that I would have a child with sickle cell disease. So we ordered genetic testing, an amniocentesis.

It took two weeks for the results to come back. Our fears were now realized. We were faced with the news that our first born son, Richard Anthony would have sickle cell disease. After much prayer and meditation, my husband and I both decided we would still go forward with the pregnancy. We would pray for healing and seek the best care possible for him.

Richard was born October 2, 1997; the most beautiful baby I'd laid eyes upon. We immediately sought specialty care for him. But by 4 months of age, Richard was in the hospital every month with fevers, infections and even had several blood transfusions; five before he even turned a year old. It was a very difficult time. I'd decided that I would do my graduate paper on sickle cell disease and the newborn screening program.

After finishing graduate school our family moved back to Jacksonville. Meanwhile, we were expecting another son, Spencer. His genetic testing showed that he also had sickle cell trait. During that time, though, we were thankful. Richard was doing well, with no hospitalizations for about seven months.

Then one early morning around 1:30 a.m. on August 14, 1999 Richard was rushed to the hospital with an extremely high fever. By sunrise, he was gone. His physical life journey in this world had ended. His healing had finally come. The trials and tribulations of dealing with the disease were over - no more hospitalizations, no more finding veins, no more swollen hands and feet, no more pain, no more fevers, and no more blood transfusions.

Though I was glad he would not suffer anymore, I still felt as if my world had ended. I missed my son. The pain was indescribable. It was very difficult for me to continue on. It was through diligently seeking God and the support of my beloved husband, parents, biological and spiritual family that I was able to live again.

I remember one night... I cried out to God and just asked for comfort and for him to lead me in fulfilling my divine calling. I found faith and hope in the words from St. John "I will not leave you comfortless." I began to volunteer with the Sickle Cell Disease Association of America-Northeast Florida Chapter. I wrote a small grant to coordinate a Sickle Cell Disease Health Symposium for patients, families and health professionals in 2000. I continued my professional career, training family medicine and pediatric residents in community health concepts and cultural competency.

When our daughter, Trinity, was born January 14, 2003 with the sickle cell trait,I felt there was something greater for me to do.

In April 2003, I became the Program Administrator/Manager for the Comprehensive Pediatric Sickle Cell Program at Shands Jacksonville/Nemours Children's Clinic under Vice President Elizabeth Means. This opportunity allows me to touch the lives of families daily affected by sickle disease, to develop programs (tutoring, health education, support groups), and to be active in community outreach/education. The Comprehensive Pediatric Sickle Cell Program has moved into a brand new building offering medical management, social services, genetic counseling and psychological counseling/evaluation. My past experience with Richard has brought me to my destiny in helping others face this debilitating disease.

September is officially National Sickle Cell Month. Every year 1000 babies are born with sickle cell disease in the United States. There are about 70,000 people with sickle cell disease in the United States and millions worldwide. Sickle cell disease primarily affects African Americans in the US. The disease occurs in approximately 1 in every 500 African-American births and I in every 1000 - 1400 Hispanic American births. Other ethnic groups are also affected, including people with ancestry from South America, Cuba, Central America, Saudi Arabia, India and Mediterranean countries, such as Turkey, Greece and Italy.

What is Sickle Cell Disease? Sickle cell disease is an inherited blood disorder, characterized primarily by chronic anemia and episodes of pain. The hemoglobin molecules in the red blood cells carry oxygen for the lungs throughout the body. In sickle cell anemia, the hemoglobin is defective and causes the red blood cells to cluster forming a stiff "sickle" shape. These red blood cells stack causing blockages that deprive the organs and tissue of oxygen-carrying blood.

It is important to understand the difference between sickle cell anemia and sickle cell trait. Individuals with sickle cell trait carry one defective gene and generally have no symptoms, but they can pass the sickle hemoglobin gene on to their children. Individuals with sickle cell anemia have two defective genes and have serious medical complications including, pain, infections, strokes, acute chest syndrome, jaundice, chronic anemia and sometimes even death. Experts say that the average life expectancy for people with sickle cell disease is about 40 years of age.

In addition to the physical effects of sickle cell, there are the emotional, social and financial effects of the disease. Often times children with sickle cell anemia experience delayed growth and are the target of ridicule. They experience low-self esteem, depression and sometimes have difficulty developing relationships with their peers. Children are not educated about the disease and believe it is contagious and sometimes are not empathetic to children living with sickle cell anemia. Because of frequent hospitalizations, children with sickle cell anemia perform poorly in school. In addition, those that experience strokes sometimes have cognitive delays. Adults suffering with sickle cell also face significant challenges. Adults face discrimination related to seeking pain medication and often can't keep jobs because of frequent hospitalizations. Cultural competency training is needed to inform health professionals of the importance of treating sickle cell patients with respect and dignity.

There is no cure for sickle cell disease, but there have been some improvements in sickle cell disease treatment and management. With the onset of the Florida Newborn Screening Program in the mid-eighties, babies with sickle cell disease are identified early. At two months of age, young children with sickle cell anemia are given oral penicillin twice a day, to prevent pneumoccocal infection and early death. In 1995, the National Heart, Lung and Blood Institute demonstrated that daily doses of the anticancer drug hydroxyurea reduced the frequency of painful crises. Bone marrow transplants have been shown to provide a cure for severely affected children with sickle cell disease. There are, though, many risks associated with the procedure and the marrow must come from a healthy matched sibling. Researchers are hopeful that gene therapy will lead to a cure for sickle cell disease.

God has answered my prayers and created a path for me to fulfill my destiny. By working with the pediatric sickle cell program and local sickle cell chapter I pay tribute to my son Richard Anthony. You too can join me in Breaking the Sickle Cycle by celebrating Sickle Cell Month.

You can have the test (known as a gel electrophoresis) done at your doctor's office or some local sickle cell associations provide free testing. A special test has to be performed for sickle cell screening. It does not just show up in normal blood work.For more information regarding the new Comprehensive Pediatric Sickle Cell Center, call (904) 244-4472.

For further information about sickle cell disease visit www.sicklecelldisease.org.