Less than two weeks after Tobi and Charles White brought their newborn baby girl home, they received a call from Dayton Children’s instructing them to bring her into the hospital for more testing. They were told that something came through on her newborn screening test that did not look right. After bringing her to Dayton Children’s and getting some additional tests done, Tobi and Charles learned Chardanai had sickle cell disease.
Sickle cell disease is a blood disorder of the red blood cells. Normal red blood cells are round, soft and flexible but sickle cell hemoglobin becomes sticky, hard and shaped like crescent moons. As a result, blood vessels become blocked causing decreased oxygen and blood flow to certain parts of the body, which causes intense pain.
The Whites had discussed the possibility of their child having the disease before Chardanai was even born. Charles has the sickle-cell trait; however, adults with only one sickle cell gene usually have no problem. This is why Tobi and Charles were so shocked to hear about their daughter’s diagnoses.
A few years later when the White’s family doctor could not figure out the reason for Chardanai’s continued chronic nose bleeds, they once again came to Dayton Children’s for some testing. Mukund Dole, MD, ran some tests and was able detect the reason for her nose bleeds. When Chardanai was in kindergarten she was diagnosed again with von Willebrand disease.
Von Willebrand disease is a hereditary bleeding disorder caused by the decreased function of the von Willebrand factor, which is a protein in the blood stream that is necessary for normal blood clotting.
Tobi and Chardanai later found out they both also had Beta Thalassemia, a blood disorder that is hereditary and causes the body to make an abnormal form of hemoglobin. A parent with Beta Thalassemia can pass the trait on to their child.
Although the Whites had been put in this tough situation, they decided to sit down and form a plan as a family.
“We had to figure out how we could take care of our daughter as well as maintain our home and keep a roof over our head. We have learned to work together as a team and make sure Chardanai is our priority,” says Tobi.
Chardanai has been treated by Mukund Dole, MD in the hematology/oncology department almost her whole life.
“Dr. Dole is the best and I tell him that all of the time,” she says. “Living life with sickle cell and von Willebrand disease can be hard sometimes. However, I have learned to deal with it and move on.”
According to Dr. Dole, “Chardanai and her family understand the importance of managing a disease. They all work together to keep Chardanai healthy. She is a bright young girl and I’m honored to know her family.”
Chardanai is now an active, 11 year old and an all “A” student at Westbrook Village Elementary in Trotwood. She is active in her church choir and Girl Scouts. Chardanai enjoys dancing and she dreams of becoming a nurse or doctor to help other kids who have blood disorders.
“I want to help other kids so that when they grow up they will become professionals at controlling their disease and not letting it control them.”
The Comprehensive Care Center for Cancer and Blood Disorders at Dayton Children’s provides state-of-the-art services in oncology and hematology. For more information on our services, and learn about our pediatric cancer treatment visit our Children's Care Center for Cancer and Blood Disorders.
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