The first condition Ethan suffers from is heterotaxy, also known as laterization defect or situs ambiguous. Heterotaxy occurs when a genetic defect causes the organs in the chest and abdomen to form in irregular positions. This anatomical scramble leads to all sorts of problems – such as not being able to digest food properly, a weak heart, and lack of oxygen supply.
Asplenia relates to heterotaxy. When organs aren’t in the right place, the spleen can end up in segments. In worse cases, it could be absent altogether. This small organ plays a big role in the immune system. Without it, an infection could cause severe complications, or in severe cases, death. Because of this condition, Ethan’s immune system is extremely weak.
Complex congenital heart disease is also connected to heterotaxy. This occurs when the heart is deformed. Such deformities negatively affect circulation. They can also lead to fatal complications.
To put it simply, Ethan lived with three constant threats to his life.
Ethan’s parents could pay for medical bills, but the costs soon accumulated. Worse, the doctors in Norfolk couldn’t provide Ethan with all the care that he needed. However, a team of specialists at Boston Children’s Hospital would be able to help him. Ethan would see the specialists in Boston once a year for treatment and follow-up.
There was only one problem. The high costs of doctor’s bills were starting to drain the family resources. They didn’t have the money for a commercial flight, or long-distance tickets on a bus or train. Even if they could afford it, Ethan’s weak immune system made traveling with others dangerous. Driving wasn’t an option either; it would take more than 10 hours and span almost 650 miles.
Healing seemed like an impossibly faraway target. Ethan’s family was running out of options to make this long shot. And worse, they knew Ethan was running out of time.
But even the longest shots have a chance to hit the bullseye. Mercy Medical Angels’ volunteer pilot program enabled Ethan and his family to travel from Norfolk to Boston Children's Hospital. His family didn’t have to pay for the travel, and Ethan was able to travel safely.
Despite healing being a long shot, the volunteer pilots enabled Ethan to aim true. They will continue to help him access life-saving care at Boston Children’s Hospital.
When asked how the volunteer pilots from Mercy Medical Angels helped Ethan, his family’s answer spills over with gratitude. “This was our first experience with Mercy Medical Angels,” said Ethan’s father. “We were amazed – everyone made sure that we were safe and comfortable the entire way.”
He adds, “They couldn’t have been nicer!”
When children like Ethan suffer from multiple rare diseases, their lives are threatened and thrown out of place. Mercy Medical Angels’ volunteer pilot program ensures that children like Ethan can live a better life. Thanks to the assistance with travel, children and their families can find healing and hope. And with that assistance comes a reassurance that everything is in place.
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