INDIANAPOLIS – September is Sickle Cell Awareness Month and in honor of that, one local family is pleading for people to register as bone marrow donors.
Elliot Preddie was diagnosed with Sickle Cell Disease before he was even born. Many states, including Indiana, screen newborns for the disease.
“We got a letter from the state department that told us your son has tested positive for this disease,” Tremesha Preddie said. “When I got the letter, I just went to his room and held him. He was a newborn. He was two weeks old. I just sat there and cried.”
Doctors say the life expectancy for those with Sickle Cell Disease is about 40. Often, those decades are filled with pain, surgeries, blood transfusions and more.
“It’s pretty earth shattering. He was my first born and all you want is healthy, ten fingers, ten toes. You know your child is going to have a life that is potentially cut short.”
By the time he was 11 years old, Elliot Preddie had been through a lot of treatments including chemotherapy, radiation and weekly blood transfusions. His body was so used to getting those transfusions that it developed antibodies. The family struggled to find blood matches for him.
“We reached a point where it was almost impossible,” Tremesha said.
Eventually, Elliot developed something called Moyamoya Disease, a neurovascular condition in which the blood vessels that supply blood to the brain narrow. It limits the blood flow to the brain.
“He was extremely high risk for having a severe stroke,” his mother said. “So our decision was largely made for us.”
The “decision” Tremesha refers to was a bone marrow transplant. Typically, an individual would turn to a sibling for this but Elliot’s younger brother, Carter, also has Sickle Cell Disease. That wasn’t an option.
“There is a crisis in terms of donors and matches,” Tremesha said. “Especially in the African American community.”
“Why is that?” asked anchor Angela Brauer.
“African Americans – due to our history in this country – we have a lot of mistrust in the medical community. You also compound with that with the fact that Sickle Cell Disease is not very well studied or funded,” she pointed out.
Doctors found four complete matches on the bone marrow registry for Elliot, but none of them responded when called upon for help. At last resort, they offered to find a partial match for Elliot. The medical team at Riley Hospital for Children started combing his family tree.
“Our nephew, at 22, was like, ‘Just tell me when and where to be there,’” Tremesha said. “Our nephew is our hero. He saved our son’s life.”
CBS4 asked doctors about that partial match option.
“Recently, there has been a lot of research into the potential for half match and the reason for that is it can be hard for our sickle cell patients, particularly our minority populations, to find a full HLA match for them,” said nephrologist Seethal Jacob.
She confirmed the need for donors, especially those of African American and Latino descent.
“Our goal during Sickle Cell Awareness Month is to increase community exposure to what Sickle Cell Disease is and to raise awareness to whether you might be a carrier for the disease,” she said.
“For those of here in Indy and even abroad, especially in the African American community, please, please, please become a donor,” Tremesha pleaded. “The bone marrow registry is something completely different than what you sign up for at the BMV. Save a life like my son’s. It could be yours one day. It could be your child one day.”
Elliot is now recovering. He said he feels a lot better. He plans to pick up soccer and baseball and continue training in Taekwondo.
For more information on how to become a bone marrow donor, click here.