Double outlet right ventricle (DORV) is a rare congenital heart defect, meaning it’s a condition a baby is born with. In a normal heart, the pulmonary artery connects to the right ventricle, and the aorta connects to the left ventricle. DORV creates a problem because the right ventricle carries oxygen-poor blood, which then gets circulated in the body. Not only is Leland’s condition dangerous, but it’s incredibly rare.
Leland is a perfect example of why A Special Wish Foundation — Dayton (ASW), is vital to Dayton and surrounding communities. When asked how Amber Weinberg, Leland’s mother, found out about ASW, she said she learned about the foundation while meeting with other parents through a support group called Mended Little Hearts. This group brings together parents in Dayton who all have children suffering from various heart-related defects.
“The parents openly discussed what A Special Wish Foundation does in Dayton, and she should seriously consider reaching out so Leland could have his very own wish come true,” she said. Weinberg waited until her son was 3, and began the process.
She filled out the necessary paperwork and decided to wait until Leland was old enough to make his very own choice. “As he got older,” said Weinberg, “Leland was constantly talking about going on vacation. He would look at old photos of places I had traveled and just knew he wanted to go on his very own adventure and his adventure would be to Walt Disney World.”
Leland and his family had the experience of a lifetime. When asked what Leland’s favorite part of his trip was, there was no hesitation in Weinberg’s response, “Baymax.” Baymax, a character from the Disney animated movie “Big Hero 6,” is the healthcare-providing nurse/doctor robot who helps to improve healthcare around the world. Leland was incredibly drawn to the idea of a robot who took care of sick people and Leland desperately wanted to meet Baymax.
On the day he was going to meet Baymax, he wasn’t feeling his best, but Leland was not going to miss the opportunity. The meeting was everything he could have hoped for including receiving a big hug and a stuffed Baymax.
“I think ASW made Leland feel like he wasn’t any different than other kids,” his mom said. “Furthermore, it gave all of us an opportunity to have a normal week. We just felt normal! We felt like everyone else. Leland doesn’t always get to live life as one of the ‘normal’ kids, and the way he was treated by the ASW staff, along with how he was treated by the staff at Give Kids the World, he simply thrived and didn’t have to think about everything he’s had to go through in his very young life. Even though Leland has a shortened lifespan, this trip gave our family the opportunity to feel happy and normal. This was a once in a lifetime trip that we will never forget.
“I wish people would be more aware that there’s a difference between life-threatening and a last wish. This trip was a celebration of Leland’s life! And I want to thank Wright State University Boonshoft School of Medicine and Smith Middle School for their help in making this all happen. People who donate to A Special Wish Foundation — Dayton are changing lives. They may never know the difference they’re making, but with this support, it’s changing people for the better.”
About the Author