Tayler Clark, left, and her older sister Tehryn get to know some new furry friends for a photo shoot—baby bunnies from the Good Earth Learning Center near Cabot.

One look at the Clarks and you see a picture perfect, red blooded American family. You see happy and healthy children enjoying life and growing up in a nurturing home. They’re warm, loving and energetic. You can’t tell there’s something just below both Tehryn’s and Tayler’s skin that at any given moment can cause excruciating pain and threaten their lives. You’d never know their red blood cells cause any problems at all. You would also never guess just days before our photo shoot, Tayler was in the hospital.

Tehryn, 9, and Tayler, 6, both have sickle cell anemia, which requires they take daily penicillin treatments and folic acid to fight off any infection and strengthen red blood cells. Father Joffrey Clark shares, “Any blunt force, extreme heat, dehydration, or infection can cause the girls a pain crisis.” He says, “The pain is like a hammering in their joints. Also, their spleens are enlarged and extend outside of the ribcage. People with sickle cell generally have shorter life spans and are smaller in stature. (For instance), Tayler is in the fourth percentile. She is only 36 pounds at 6 years old.”

Mother Terri Clark states, “Tehryn was born at around 34 or 35 weeks. She had stopped moving, but her heart rate was fine. After delivery they found the umbilical cord was wrapped around her neck twice. Tehryn was six weeks old before we found out she had sickle cell anemia. She was treated with steroids and hormones and was diagnosed with ADHD at five.” The Clarks attribute the ADHD to Tehryn’s loss of oxygen at birth.

“At first we felt like it wasn’t fair. We had done everything right, but now for the last few years we’re accepting this. We CAN do this for the girls,” says Terri. The Clarks have been married 12 years and Terri affirms, “We work together to make it work.”

Joffrey says, “We had to figure this out together. Our faith in God has truly held us together. We gave our kids back to God and He’ll take care of them. We trust the doctors and that God gave them the knowledge to help our daughters.”

The Clark family: Joffrey, Tayler, Tehryn and Terri.

Terri grew up on a farm in Arkadelphia. She says, “My daddy always said when you know better you do better.” The Clarks have applied that wisdom to their rearing of Tehryn and Tayler. The girls go to eStem and are in normal classrooms. They notify everyone of the girls’ condition and have a 504 plan with the school for both girls’ sickle cell and for Tehryn’s ADHD. They work cooperatively with their teachers, so school officials can monitor pain and assess when the girls need medical attention.

“We have to be extra cautious. We have to keep them hydrated. We definitely spend more money on fluids than most people,” states Joffrey. The couple shares that they balance one another out in stressful situations. They know that when one of their daughters has extreme pain then their blood level has dropped. They can then be at risk for a stroke.

“We have a plan for how we handle everything. Even on vacation, we have to know everything in advance—direct instructions for everything—where local hospitals are, carrying extra juice boxes and ibuprofen,” says Terri. They are prepared for a change in plans at any given moment.

For example, Joffrey was to go to Texas for a business trip. He is a successful agent with Regions Insurance. At the last minute he had to call his client to reschedule and head to the ER. “Everyone is so understanding though. We take the situation in stride. We are so thankful for the staff at Arkansas Children’s Hospital. We are always praying and thinking about the other families we see at Children’s. You know, we get to go home after a few days, but there are families dealing with a child who has cancer. They are there so much longer.”

Joffrey and Terri are also advocates for the March of Dimes. “Because of March of Dimes’ screenings, parents can start early, educating themselves more about sickle cell anemia. Since we knew early our girls have been healthier. We can prevent the organ damage in early growth months,” says Terri.

“We’re working with the March of Dimes to promote education and encourage funding for research and testing,” shares Joffrey. “Everyone has always helped us so we want to pay it forward. I was raised in the worst projects in Little Rock—Sin City. There were always fires, fights and police. We were latchkey kids. Mom worked 12 hours a day, but made us stay clean and out of trouble. At nine, I was a foster kid at Methodist Children’s Home and my foster mom taught me so much too. I am still very close to both of my moms.”

Joffrey joined the military in 11th grade to help pay bills for the family. After graduating from high school and college, he went into the insurance business. Helping others seems to be second nature to the Clarks whether it is within their own family, kids at their church or volunteering. In all facets they’re living life to the fullest. Terri says, “To sum it all up, we’re answering God’s calling for our lives. We’ve been truly blessed!”

WHAT IS SICKLE CELL ANEMIA?

Sickle cell anemia is a term most people have heard of, but do not really understand what it is or its impact on an individual’s life.

So, what is Sickle Cell Anemia? The U.S. Department of Health and Human Services’ National Heart, Lung, and Blood Institute provides answers.

Sickle cell anemia is a condition that causes the body to make sickle-shaped red blood cells, which means they are shaped like a crescent rather than the normal disc shape. Red blood cells usually look like doughnuts with holes in the center, so they move easily through blood vessels. They also contain iron-rich protein called hemoglobin which carries oxygen from the lungs to the rest of the body.

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Sickle cells contain abnormal hemoglobin called sickle hemoglobin that causes the cells to develop a sickle, or crescent shape. They are stiff, sticky and tend to block blood flow to limbs and organs. Blocked blood flow can cause pain and organ damage and raise infection risk.

Anemia is a condition in which your blood has a lower than normal number of red blood cells. This condition also occurs when your red blood cells don’t contain enough hemoglobin.

Red blood cells are made in the spongy marrow inside the larger bones of the body. Bone marrow is always making new red blood cells to replace old ones. Normal cells live about 120 days in the bloodstream and then die. In people with sickle cell anemia, the abnormal sickle cells usually die after only about 10 to 20 days. The bone marrow can’t make new red blood cells fast enough to replace the dying ones.

Over the past decades, doctors have learned a great deal about the lifelong disease of sickle cell anemia. They know its causes, how it affects the body, and how to treat many of its complications which require immediate attention.