18 blood transfusions & counting

Unfortunately, Charlotte did not show a response to her first steroid trial. This means that she will continue to receive blood transfusions every ~3 weeks. 

Our next steps are:

• Sedated MRI of her liver (FerriScan) to monitor iron overload (from chronic blood transfusions)
   
• Bone marrow biopsy (this is to assess the extent of genomic deletion)

• Iron chelation medication will be started after we have an understanding of how overloaded her body is
   
• Add L-leucine (an amino acid) as an additional treatment to promote weight and linear growth
   

DBA patients have two chances to trial steroids before they call it a complete failure and begin the conversation about potential bone marrow transplant. Charlotte will re-trial steroids sometime after she turns 2. 

Charlotte is the strongest girl we know! Despite this setback, we are still choosing hope. Hope is what keeps us going and we know this will be just a small part of Charlotte’s story!