Shelbys Transport to NYC Clinical Trial

3/2014 UPDATE:  Shelby is about 120 days post BMT transplant.  Her transplant was going really well and almost ready to go home, until about day 90 when she developed the EBV virus which ended up developing into PTLD (a form of Lymphoma Cancer) 

She has 2 options.  One is chemotherapy, which, with her being newly diagnosed with Von Willenbrand disease, a bleeding disorder, will be extremely harsh on her body.  She is already at risk for life threatening bleeding.

The other option and best outcome is for her to travel to NYC for a clinical trial that will fight the EBV/PTLD with 'smart' Tcells.  These 'smart' Tcells will only go after the bad cells unlike chemo which will go after bad cells and also kill off good cells as well as put her at high risk for life threatening bleeding.

Air Transport was finally approved, however insurance is not covering the ambulance costs from the MN hospital to the airport and from the airport to the NY hospital.  I was told these could be as much as $2500.   Because she is having to take a medical flight, they will not allow us to drive her to the airport ourselves.  We are asking for your help with this piece of the puzzle so we can get her to NYC to start treatment.  

11/2012    16-year old Shelby was recently diagnosed with Very Severe Aplastic Anemia. This is a disease of the bone barrow, where the marrow stops making enough red blood cells, white blood cells and platelets for the body.  
She can  no longer attend school or be around people because her immune system has also been wiped out.


Follow Shelby's progress:


Shelby will travel 6 hours weekly to and from the hospital from her grandparents' house for weekly platelet and red blood cell transfusions. The gasoline costs will be staggering. In addition, the family has to find income for Jennyfer (mom) to travel there which includes a 2-hr drive and 3 hour flight and balance her other daughter in Florida. At some point Shelby may need a bone marrow transplant


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Jennyfer Huff 
Brooksville, FL
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