Emma Grace Memorial Fund

Emma Grace was our heart warrior! She was born with a congenital heart defect (AVSD with aortic arch coarctation) She lived at MUSC for 383 days in the PCICU surviving 4 open heart surgeries, gallbladder surgery, and innumerable procedures, kidney stones, gallstones, setbacks, complications, infections, etc. She was diagnosed back in March with Pulmonary Vein Stenosis which was an incurable diagnosis but fought on for over 2 months and celebrated her 1st on May 15th. She passed two weeks later on June 1st. She was surrounded her entire life by people who loved her, she inspired thousands with her determination, fortitude, strength, courage and amazing smile. Many of our friends and loved ones have asked how they can help this past week and while we were reluctant to launch a Go Fund Me page we have decided there are several things we would like to do for Emma and also pay it forward in some way helping others in a similar situation. Emma’s funeral expenses are very reasonable thanks to the generosity of Stuhr Funeral Home. We are working with them for a beautiful headstone, remembrance bench to sit on and possibly letting us plant a tree in Emma’s name nearby. Funds received will go to cover some of these expenses, we also want to give some to help other families of CHD children less fortunate then us. While this journey was excruciating at times it was also a blessing to have this much time with Emma and we consider ourselves so fortunate to live local and be able to sleep in our own bed most nights. We have previously been able to raise some money for both the Ronald McDonald house and also the palliative care team that help families like ours. We are devastated by Emma’s passing but know that we are at peace with Emma’s journey and are trying to Honor her life by being more like her - Strong, Courageous, Loving, Full of Fight and Smiling as we go through our day. We never felt sorry for Emma so please don’t feel sorry for us. Let Emma and her story inspire you to be better, more courageous and amazing! #EmmaStrong