2012

Heart Defect

My daughter was born with CHARGE Syndrome which can be a very complicated disorder. Since she began seeing Kristen Myers, Michael D Myers and Barry Gillespie at age 6 weeks they gave her vision, allowed her to nurse, released her torticollis, allowed her to breathe freely, avoided kidney surgery, avoided 5 years of harsh medication, avoided ear tube surgery and avoided a feeding tube – just to name a few. Part of her journey is chronicled in a video on Dr. Barry’s website.

Way back when she was two months old, Heart Defect was added to her list of medical issues. The cardiologist told us she would require surgery but since it wasn’t fatal, they were willing to wait two years until she was bigger and stronger.

We returned to the cardiologist today for her surgery consult appointment and lo and behold – the defect was gone! Her EKG was normal and her Echocardiogram revealed nothing out of the ordinary (other than a great anatomy lesson for my homeschooled 5 year old.) Another win for CFT!

This work has done so much for her, she is literally a miracle amongst other children who share her disability. And, that is only from the things we know about. I can’t imagine what her life would be like or what other things CFT has prevented and will continue to prevent in the future!

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