Our family has engaged in conversations about a bone marrow transplant for Kailyn, or a possible gene therapy study, for many years now. Kailyn had several major hospitalizations, three acute chest syndromes which required a 6-month blood transfusion regimen each time, multiple illnesses, ER visits, days away from school and events, and more and more. Her team of doctors from Walter Reed Military Medical Center recommended her for the transplant, and after three long years of waiting due to COVID-19, we were finally able to move forward with a haploid transplant. 

Moving forward meant almost a year of planning – education, consults, appointments, coordination, coverage, multiple medical departments, testing – you name it, we did it. It took the coordination between Walter Reed and Children’s National Hospitals to make it all happen. 

Over fifteen years, I have watched my daughter, Kailyn, endure some of the worst pain in her life. I watched her overcome the challenges that sickle cell SS brought to her daily life. I watched her warrior through the emotional, mental, physical, and spiritual battles she faced daily – and win. She had sickle cell – but it never had her. It affected her body, but it didn’t rule her mind and her spirit. She always won despite the circumstances.  

Now, the transformation begins…..a new life. A new view. A blessed outcome. And Kailyn always wins 🙂