I am constantly “haunted” by my granddaughter’s Neuroblastoma battle .
I had been diagnosed with a genetic disorder, Severe Mitral Valve Prolapse, approximately 25 years ago. Having been asymptomatic until recently, I chose to avoid further testing and/or follow-up procedures. (I worked as an architect while raising tree children as well as three grandchildren.)
When my youngest granddaughter, Amelia, was diagnosed with stage 4 metastatic Neuroblastoma and OMS in 2019, I put my health “on hold “, caring for her through three years of surgery, chemotherapy, radiation, immunotherapy as well as a multitude of other therapies at Comer Children’s Hospital in Chicago, Illinois.
Amelia has been in remission during the past year and asked me to “please take care of your heart, Grandma and I will teach you how to be brave and strong.”
It was then that I decided to do a follow-up with a Stress Test, CT scan, angiogram, as well as other required tests only to hear that I have “Extreme Mitral Regulation” which is a complication of Marlow’s Disease.
Upon going through many obstacles, I finally had the opportunity to meet with Dr. Abdallah El Sabbagh and discuss Mitral Valve Repair rather than replacement. He explained everything in great detail and I am excited to proceed with this procedure as soon as possible!
Despite the fact that everyone I had spoken with, lay and professional, insisted I have open heart surgery, I knew this was not a procedure I wished to proceed with at this juncture.
My intuitive nature had always saved me and my loved ones from making choices which may have resulted in mortal outcomes and I am confident that, once again, I have made the best decision for myself.
I have complete confidence in Dr. El Sabbagh and the Mayo Clinic team in Jacksonville, Florida!