Support Blanca's Dual Transplant Journey

Dear Friends and Family,

I was born with a rare genetic disease called “Glycogen Storage Disease, type 3a”. I was diagnosed at N.I.H in 1982 and spent most of my childhood in and out of N.I.H for follow up and research. I was in a stable condition from 10 years old until last year.

During the stable years, we believed I had a mild case of GSD 3 and continued monitoring my health with the Genetics team at Johns Hopkins in Baltimore. I have two children who are now 13 and 11 years old. They were born healthy in Johns Hopkins and did not inherit my disease. I was fortunate to work at Fitzgerald Auto Mall in Rockville, the best dealership in the DMV area. I worked there for 23 years in the corporate office and had the best mentors who believed in me and gave me opportunities for growth within the company. I found my passion in mentoring students. I became the supervisor for Don Bosco High School Corporate Work Study Program at the dealership. I mentored over 20 students and still keep in touch with several of them. I miss the day to day routine with my work family. I hope to fully recover and continue my passion of giving back to the community.

In April 2023, I woke up throwing up a lot of blood and was rushed to the nearest ER. There they found me in need of a massive blood transfusion. This is when I was first diagnosed with cirrhosis due to my genetic disease. I went through a lot of testing at Hopkins. Some difficult ones and some were as simple as blood work. At this point, I began to struggle with all that was going on and found myself feeling like everything was being ripped away. I was reminded of how great God is and put my trust in him.

In October, we were approved to go on the waiting list for a liver transplant, but only if i had complications with a liver procedure called TIPS. Procedure was performed end of December and it was successful. 

Until 1 week after the procedure, when I began having heart symptoms and fluid retention. Continued testing and discovered that my heart was having troubles so they scheduled a right heart catheterization and biopsy to get an exact diagnosis. On March 4, I received a phone call that I would need to begin evaluation for a heart transplant. This is when I was first diagnosed with Advanced Heart Failure. They explained that GSD 3a was causing my heart to fail just like my liver. Biopsy found scarring and muscle loss in my heart.

My medical team at Hopkins began preparing me for a dual transplant heart and liver in order to survive. I talked to the kids to give them a clear understanding of what the best treatment for me was going to be and have had open communication with them regarding the surgery and recovery. Told them I was waiting for my perfect donor match to save my life. I explained to them how important it is to be an organ donor.

I am creating this fundraiser asking for financial support to help me pay the unforeseen medical bills. In addition, I am a single mom now. We will continue with unforeseen expenses, as I will require more care during the recovery phase at home. Recovery can be weeks to months. I will need to have weekly biopsies and right heart catheterization to make sure my body isn’t rejecting the heart. Then it will be bi weekly and finally monthly for the first year. 

I have been on short term disability since January 2024 receiving limited funds. This has been a trying year for my family. We continue to pray to God for strength and courage. We are so grateful to be in the Johns Hopkins network, receive a chance to live by an organ donor and the best medical team that has been monitoring and advocating for me my whole life. I am beyond words grateful for the outpouring love and support we are receiving from family and friends. My village warms my heart and gives me the strength to go on. We are very grateful to those that can donate financially as we are entering the transplant phase. Sending prayers and words of encouragement are another amazing way to support us.

Thank you for taking the time to read my story.