Justin Ryan Frey Rare Heart Defects

Justin Ryan Leibowitz - Frey was born July 20th 2017 with a severe  case of Ebstein's Anomaly - a critical and rare congenital heart defect which affects the right side tricuspid valve. Miraculously he is asymptomatic and as severly deformed as the valve is, it works! He would however eventually have to under go surgical intervention once he is no longer asymptomatic and the valve begins to leak. long term monitoring was currently all that he needed.  Up until a few weeks ago, during a routine echocardiogram, an additional  heart defect was discovered which affects the septum muscle.  It wasn't until his cardiologist suggested a sedated echocardiogram be administered at LIJ that it was diagnosed as Hypertrophic  Restrictive  Cardiomyopathy. It is extremly rare to have both congenital heart defects at the same time.  He was just transferred to  New York - Presbyterian Morgan Stanley Children's Hospital. They will hopefully come up with a plan and run additional critical tests to see if he is a candidate for possible medication therapy or surgical intervention. There is a very strong possibility he will need to undergo a heart transplant if they feel nothing else could be done or if all other options have been exhausted. We are extremly hopeful that this will not be the case. He is the happiest  little baby boy who has brought  nothing but joy and love to our family. Please keep him in your thoughts and prayers. Please share this page as much as possible. Thank you.
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  • Yvette Lugo 
    • $50 
    • 44 mos
  • Ginger Chronis 
    • $25 
    • 45 mos
  • Amy and Bill Schrettner 
    • $50 
    • 45 mos
  • Kim Castillo 
    • $50 
    • 45 mos
  • Kathleen Connell 
    • $50 
    • 45 mos
See all

Organizer

Kaitlyn Romano 
Organizer
East Setauket, NY
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