Megan Lancaster, of Canton, has adorable twins, Ava and Olivia. At 14 months, they’re crawling and cruising, trying hard to become toddlers.
They are healthy for now. But having been diagnosed with sickle cell disease just after birth, the little girls could have their first painful, sickle cell health emergency any time now.
Like all babies, Ava and Olivia were screened at birth for sickle cell disease. With an initial positive screen, the girls were put on daily penicillin treatment and Megan and her boyfriend, Christopher, just assumed the screen confirmed sickle cell trait.
But when another blood test confirmed the girls had sickle cell disease, both parents broke down and cried.
Sickle cell disease (also called sickle cell anemia) is an inherited, lifelong disorder in which the body makes sickle-shaped red blood cells. The stiff and sticky cells tend to block blood flow in the blood vessels of the limbs and organs, causing pain and organ damage, and raising the risk for infection.
They learned the girls will be able to attend school and participate in sports.
But they’re at much greater risk of infection than other children so their parents keep them out of day care, adjusting their work schedules so he works days and she works nights to care for the girls at home.
“Winter was a bit rough,” Megan said. “They had RSV and pneumonia and had to be hospitalized, but things are better now that spring is here.”
Megan knows the symptoms of a sickle cell crisis: a high fever, swollen hands and feet, and a hard stomach.
“I’ve been told I will hear screams unlike any I have heard before,” she said.
Ava and Olivia continue on their penicillin treatment and their red and white blood cell counts are closely monitored with visits to Akron Children’s every 3 months.
They are optimistic about the future and appreciate having a team of experts within a 30 minute drive of their house. They also know a bright future for patients like Ava and Olivia rests with research, screening and access to treatments, such as bone marrow transplants, if needed down the road.
Be a Lifesaver
Megan has agreed to allow Ava and Olivia to be “poster girls” for “Be a Lifesaver” on May 30 at United Baptist Church in West Akron.
Sponsored by Akron Children’s Hospital’s Showers Family Center for Childhood Cancer and Blood Disorders, the free event will include sickle cell trait/disease testing, as well as the opportunity to donate blood and join the National Be The Match Bone Marrow Registry.
“In this one event, we are hoping to build awareness, help people learn their health status regarding sickle cell, and make it easy and convenient for everyone to help others, either by donating blood to our local American Red Cross or joining the national bone marrow registry,” said LaTonya Lewis, sickle cell program director at Akron Children’s. “If you are enrolled in the bone marrow registry, you have the potential to save the life of someone affected by a disease like leukemia, sickle cell disease or lymphoma and that is an amazing thing.”
Be The Match
Joining the Be The Match registry, which requires nothing more than paperwork and a swab of the cheek, means you could be called upon to become a bone marrow donor for someone facing a life-threatening illness.
Be The Match is especially in need of diverse donors because you are most likely to match someone of your own race and ethnicity.
Sickle cell anemia is most common in people whose families come from Africa, South or Central America, Caribbean islands, Mediterranean countries (such as Turkey, Greece, and Italy), India, and Saudi Arabia. It occurs in about 1 out of every 500 African American births.
You must be between the ages of 18 and 44 to join because research shows younger donors provide the greatest chance for transplant success.
“We have an especially strong need for donors in certain racial and ethnic groups,” said Lewis. “For example, while a white patient has a 97 percent likelihood of finding a bone marrow match, an African American patient only has a 76 percent likelihood of a match.”
For more information about the May 30 event, contact Lewis at 330-543-3521.