For the most part, three-year-old Zion is your typical toddler: he loves dinosaurs, superheroes and wrestling with his older brothers. “He’s a flirt and a charmer,” Zion’s dad, Andre, says with a chuckle. “And as long as he stays hydrated, we let him try new things and play hard!"
Zion was just one week old when he was diagnosed with sickle cell disease (SCD): an inherited blood disorder that causes red blood cells to become crescent - or “sickle” - shaped, stick together and block blood flow to the rest of the body. Both of Zion’s parents carry the genetic trait for SCD, as does his twin, Nuri, so the diagnosis wasn’t a huge surprise; Rather, it marked the first of many challenges ahead in managing his lifelong illness. Within days of his diagnosis, Zion and his family were introduced to ASK.
“ASK is phenomenal,” remarks Taniqua, Zion’s mom. “Everyone is so helpful and kind, and the financial help that ASK has given us has been incredible. The kids appreciate the gifts and toys and the people at ASK are always on hand to lift our spirits.”
Zion’s family was able to participate in ASK’s 2021 holiday Tacky Light Tour, a trip to the Richmond Zoo, the ASK 2022 holiday party and several more ASK events. Being diagnosed during the COVID-19 pandemic meant extra isolation from the outside world, so these opportunities for connection were that much more impactful for Zion and his family as they navigated his illness.
“The older kids were very upset because they understood what Zion may go through, but we have rallied as a family and they are very protective of their little brother,” Taniqua continues. “Now, we’re hoping that Zion will be able to have a bone marrow or haploid transplant to improve his situation, with the new marrow coming from either me or his dad if not an unrelated donor.”
Sickle cell disease patients can experience episodes of intense pain. Zion experienced his first pain crisis when he was eight months old, causing a terrifying stroke. While monthly blood transfusions and iron chelation therapy currently keep Zion’s pain crises at bay, a bone marrow or stem cell transplant is vital to helping him live a long and full life. Even so, Zion doesn’t let sickle cell disease stop him from being his awesome self!
“Treatments have improved, technology has improved, and Zion can be an example that children can live a normal life with sickle cell,” shares Andre.
Taniqua and Andre want people to know that children living with SCD in Virginia need blood transfusions, and encourage everyone who is able to step up and give what they can to save kids like their son.
“It was heartbreaking to know that during the blood shortage, some kids couldn’t get the blood transfusions they needed. Please give blood if you are able. You never know whose life you may save. We are so grateful that Zion could receive the blood he needed... Someone out there helped save our baby."