Kimora, 13, and Kylie, 9, are sickle cell warriors. These sisters were diagnosed with sickle cell disease in early 2020. Witnessing the debilitating pain of these girls caused their parents’ heart-wrenching hurt.
“As a parent, as a mother, no one should have to see their child suffer,” said their mom, Destiny Van Sciver.
Sickle cell disease affects approximately 100,000 people in the United States and 1 in 343 Black American children are born with the disease. The only known cure is a bone marrow transplant. In a truly unique situation, it would only take the power of one donor’s stem cells to be the cure that both Kimora and Kylie need to live happy, healthy, and pain-free lives.
“I just really want to get this bone marrow transplant so that I can live life to the fullest,” Kimora shared.
Kimora was compelled to replace her love for science and shopping with intense physical therapy and learning how to walk again after she had a complete right hip replacement surgery due to the effects of sickle cell disease.
“This has been the hardest time in our lives, watching our daughter fight to walk again,” Van Sciver said. “In addition, the doctors informed us that Kylie’s abdominal pain is a result of an enlarged spleen, which is a part of sickle cell organ damage.”
Hoping for a new normal
The Van Sciver family had so many hopes for 2021: the hope of a “normal” life filled with family dinners, shopping trips with mom, playdates with friends, and much more. But now, without a matching donor, the family is concerned about increased risks of stroke, kidney failure, liver failure, blindness, and even death.
Most importantly the girls’ physical ability to even accept a bone marrow transplant becomes increasingly risky the older they get.
“It’s becoming increasingly difficult as a mother to provide hope when our hope rests upon a match that has yet to be found,” Van Sciver said. “We are in a fight against time, awaiting a donor match to save our daughters’ lives before this disease slowly eats away at them. It’s been a struggle living this reality and knowing there is nothing I can do to cure my children. But before that will become reality, we need more people to get registered as blood stem cell donors.”
This disease has stolen smiles, compromised their health and placed the Van Sciver family in financial ruins. A perfect match would give this family hope for a brighter future. Globally, DKMS is working diligently every day to add more potential lifesavers to the donor pool to ensure Kimora, Kylie, and every patient like them can get a second chance at life.