Bone Marrow Transplant for Sickle Cell: One Family's Cure Story

In this episode of Child Life On Call, guest Maite Rodriguez shares her daughter Alessia's inspiring journey with sickle cell disease (SCD)—from diagnosis at birth and painful crises to finding a cure through a pediatric bone marrow transplant at Memorial Sloan Kettering. Maite discusses the challenges of long-term treatments like hydroxyurea, the emotional toll of hospitalizations, and her family's decision to pursue IVF to create a genetic match. She also introduces her bilingual children's book, Just Like the Moon, which helps families explain sickle cell to children, siblings, and communities.

 

⏱️ Episode Timestamps

• 00:05 – Newborn diagnosis and the first sickle cell pain crisis
  
  

• 09:00 – Daily medications: penicillin, folic acid, and hydroxyurea
  
  

• 20:00 – How advocacy, research, and community support make a difference
  
  

• 25:00 – Considering a cure: bone marrow transplant and IVF journey
  
  

• 31:00 – Why Memorial Sloan Kettering was chosen for Alessia's transplant
  
  

• 41:00 – Life after transplant: cured of sickle cell, dancing in the rain
  
  

• 48:00 – Writing Just Like the Moon, a bilingual sickle cell book for kids
  
  

📚 Resources Mentioned

• Just Like the Moon, a book written by Maite Rodriguez

• Sickle Cell 101

• Memorial Sloan Kettering Pediatric Bone Marrow Transplant Program

• Sickle Cell Consortium – Resources & Advocacy

• Ronald McDonald House Charities – family lodging during hospital care
  
  

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