Kamryn will celebrate her first birthday later this month. After a newborn screening test revealed she had sickle cell disease, her mom researched area programs to find the best fit for her daughter’s care now and as she gets older. The Sickle Cell Program at Akron Children’s serves patients from birth through age 21.
With bright eyes and a contagious smile, Kamryn Logan makes living with sickle cell disease look easy, but her mom knows managing the life-long disease won’t always be simple.
“I did my research before we decided to go with Akron Children’s for Kamryn’s care,” said Kimisha Dowdell, Kamryn’s mom. “I wanted to make sure it was the right place for my daughter – now and as she gets older – so she can learn how to care for herself and eventually transition to adult care with the help of doctors she trusts.”
The news of Kamryn’s diagnosis came as a surprise to her mom since she knew she was a carrier of the sickle cell trait, but she and Kamryn’s father did not know he also carried the sickle cell trait.
Kamryn is all smiles and loves her Akron Children’s family in the Sickle Cell Program. Her family – at home and at the hospital – work together to provide Kamryn with the care she needs to stay healthy and avoid sickle cell crises.
A trait carrier inherits one sickle cell gene and one normal gene. Although they may have no symptoms of the disease, carriers can pass the trait (or gene) on to their children. A person who inherits two sickle cell genes – one from each parent – has sickle cell disease as in Kamryn’s case.
With sickle cell disease, red blood cells that are typically round and smooth can change shape and form a sickle, or crescent. Sickle shaped red blood cells disrupt the normal flow of blood through the blood vessels, and can damage the vessels themselves. This can lead to inflammation and prevent tissues from receiving adequate oxygen. When this happens, a person can experience pain episodes, infections, fatigue and sometimes-fatal complications.
“At first I was worried I wouldn’t know if she was in pain, but I’ve learned that cries really do sound different. I also learned to look for other signs like swelling of her hands and feet or a high fever,” said Kimisha. “My biggest concern, though, is just making sure she is able to live a complete life as a child. I know medicine and treatments have come a long way over the years so I trust the care plan Dr. Bodas has her on is the best treatment available to keep her healthy and minimize crises.”
Kamryn has two different blood disorders and is able to get the care she needs for both at Akron Children’s Showers Family Center for Childhood Cancer and Blood Disorders.
In addition to Kamryn’s hemoglobin SS diagnosis, the most common and severe type of sickle cell disease, she also has alpha thalassemia trait. This second disorder is unrelated to sickle cell disease and, while it reduces the amount of hemoglobin her body makes, it might actually protect her from some of the effects of sickle cell disease.
“The clinic (Showers Family Center for Childhood Cancer and Blood Disorders) is a one-stop shop for both of Kamryn’s blood disorders,” said Kimisha. “In one visit we get her labs done, talk with specialists, our social worker and get medication. We have an awesome team at Akron Children’s and I know I can call them any time I have a question about anything.”
Kamryn will turn 1 on Sept. 30 so this past year has been filled with a lot of firsts – teething, crawling, talking and having no pain crises due to her sickle cell disease.
Kamryn celebrated lots of fists this year, including eating…although she’s not sure if she liked everything her parents fed her!
“She’s really doing great – nearly a year without a pain episode. She actually gets excited to take her (sickle cell) medicine every day,” said Kimisha. “Kamryn is happy, smart and very outgoing – she loves people and they love her right back, including her Akron Children’s team.”
Kimisha’s advice to parents who find themselves caring for a child with sickle cell disease is simple, “Educate yourself as much as you can about the disease and, most importantly, love your child and just let them be a kid. I don’t hold Kamryn back from doing things because of her disease, I just make sure we stick to her care plan.”
Kamryn’s best friend is also her big sister, Dru (5), who always looks out for her little sister and makes sure she feels loved.
Families with sickle cell trait should talk to a genetic counselor to understand their risk of sickle cell disease and other blood disorders. Many people have the sickle cell gene and don’t know it. Learn more about the Akron Children’s Sickle Cell Program and how it can help sickle cell patients and families manage the disease.
