Zachary's Heart Fund- Have a Heart

My grandson Zachary was diagnosed with a rare heart condition called Ebstein's Anomaly at 5 months in utero. His parents were told he would be still born at birth. March 17, 2005 Zachary entered this world crying and blue. He was rushed to the NICU for testing. Come to find out at that time his Ebstein's was mild. Zachary came home 7 days later. He was monitered every 2 months at the beginning. Things were looking good for Zachary so they moved appointments to every 6 months at the age of 1. From 1 to 4 years of age things stayed the same.
When Zachary was 5 thats when things started changing. His stenosis had went from mild to moderate with moderate regurgitation. The doctors had a meeting with his parents and thought it was the perfect time to do his open heart surgery. His parents were scared to death but went along with the doctors recomendations and scheduled the surgery date. August 11, 2010  was the day. His parents and family members all gathered at A.I. Hospital. Papers were signed and ready to go. Doctors famous words "ONE AND DONE!" Zachary had his surgery, raising his tricuspid valve. After surgery surgeon told them it was the most difficult surgery he had performed. Surgeon was able to raise the tricuspid valve. Four days later an echo was performed. The valve had torn and was in worse condition than before surgery. They were told it could mend itself and were sent home that day. Zachary had to be taken to the hospital every other day after discharge for echo's. Fluid started building up around his heart. Doctor put him on steroids to clear it up. Didn't work. Zachary's heart had began to enlarge rather quickly. Another surgery was scheduled for October1, 2010 to cut windows in around his heart to drain the fluid and to repair the tricuspid that was torn. After four hours into surgery social worker came out to tell us that Zachary needed to have a prosthetic valve because his could no longer be used. Family was devastated. While in CICU his parents noticed a moniter at end of his bed and asked what it was. Nurse replied, "It's a pace and every child has it after surgery." Parents knew he didn't have it after his first one. Few days later an electrophysiologist came in to talk with parents and explained Zachary was in complete heart block. Zachary's heart has lost its rhythm. This was due to surgeon trying to long to repair his natural valve. His heart was given 2 weeks to get back his "P" wave and if not a pacemaker would be put in permanetly. It didn't come back. A pacemaker was put in but doctor said just for backup in case his heart rate dropped below 60bpm it would put him back to where he needed to be. Zachary is using it 100% of the time today.
Today Zachary gets short of breath within a few minutes of walking and his face is flush always. His lips and skin are blue even in a 75 degree home. Zachary is going to be 10 in just a few weeks. His parents have had his records transferred to Boston Childrens Hospital for a second opinion. They received a call from their surgeon Friday night and he recommends Zachary must have another surgery within a few weeks no longer than a month. Zachary now has SEVERE stenosis and SEVERE regurgitation and the right atrium is enlarged and because of this his liver is being affected. This has put a big burden on his parents due to them both needing to be out of work without pay. They will need help with the cost of traveling expenses to and from Boston and to take care of their home expenses. Money is the last thing I want my grandsons parents to be worried about. Any contribution you can make to help my family would be greatly appreciated by us all!!


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Paula Riley 
New Castle, DE
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