About

Until late 2015, life was exceedingly normal for the Kile family: work, school, little league, ballet – sweating the small stuff and missing the big picture. Then Jon suffered a ruptured abdominal aneurysm that required life-saving surgery. It would be the first of seven surgeries over the next seven months, including emergency open-heart surgery to save him from an aortic dissection. He was eventually diagnosed with a rare genetic condition called Vascular Ehlers-Danlos Sydrome, in which the most serious symptom is fragile arteries prone to spontaneous rupture. Jon has adjusted to a lifestyle which forbids him from strenuous activities and stress, while finding inner peace and humor against the backdrop of raising two feral children. Jon gave up business proposals and sales presentations for writing, car-line and PTA, while Monica traded committee meetings and budgets to take on the roles of patient advocate, genetics expert, cool mom and goddess of a 17 foot Dodge van. Together they’ve determined to “live in the moment” and fill the empty spaces in the calendar with family travel and adventure.