Ben was born with a cleft palate and a heart murmur. At five weeks old, doctors discovered that he had an extremely rare combination of four heart defects called Tetralogy of Fallot. His blood flow did not carry enough oxygen from his heart to the rest of his body. He was 15 months old when he underwent his first open heart surgery. During the procedure, his pulmonary valve was destroyed, and he suffered irreversible brain damage. Throughout Ben’s childhood, his heart continued to enlarge. By age nine, his heart began failing, and he was in need of yet another open heart surgery to replace his heart valve. Ben received a porcine heart valve; only days after, he was diagnosed with aspirational pneumonia. With complications mounting and Ben’s health continuing to decline, he underwent another life-saving surgery. The following 3 weeks were absolutely critical, but Ben pulled through and slowly recovered in the ICU.
Ben is non-verbal and communicates by pointing. His only heart’s desire was to go to Disney World and meet Mickey. After all that he had been through, his wish trip to Disney was more than he could have ever hoped for. “It was exciting to see his face when he saw the arches going into Disney. He started clapping and smiling,” said his mom Cathy. “For us to see him express himself was amazing. He held Mickey’s hand and signed “hi” to him and told the enchanting princesses Belle & Cinderella that he loved them. It was all about Ben and it gave us a chance to celebrate with the whole family together. It was a chance of a lifetime and it was a wonderful wish and this was definitely something we’ll never forget,” she continued.
When dealing with matters of the heart and making a sick child’s wish come true, there is no way to quantify the value of a child’s smile. Ben’s story is one of resilience, and the happy memories he created on his wish are something that he can always draw strength from. “Ben’s wish is something we continue to cherish,” said his mom.