On December 8, 2008, J and Jana Vaclav gave birth to a sweet baby girl. She was quickly transferred to the Level III NICU at St. David's Medical Center in Austin, Texas. Three days later, she was named Marik Avila Vaclav. Marik means both "war-like" and "tender-hearted". Each day in the NICU brought new information about Marik and why she truly would have to be a fighter. An array of tests showed that Marik had a long list of congenital anomalies including hiatal hernia (her stomach was up in her chest), choanal atresia and stenosis (narrowed and blocked nasal passages), coloboma of both retina (missing pieces in retina), micrognathia (small jaw and tongue that falls into the back of the throat) and multiple heart defects. In just a few days, it became apparent that the grouping of symptoms could be labeled as a genetic condition called CHARGE Syndrome. PLEASE visit the following link to learn more about CHARGE Syndrome!
When sweet Marik was one week old, she underwent her first major surgery to correct the hiatial hernia, which pulled her stomach down into her belly and put in a gastrointestinal tube (g-tube) in case she was unable to eat by mouth. Two weeks later, she was transferred to Dell Childrens Medical Center to have a tracheostomy procedure. The trach would allow her freedom of breathing without being connected to machines and offer a chance for her to come home sooner. Marik was in the NICU for a total of 48 days. She came home in late January and then was ready in May for open heart surgery to patch two holes, tie off the connection between the aorta and the pulmonary artery, and dialate (open) the pulmonary valve.
Today, Marik still eats through the tube in her stomach, breathes through her trach, and just got off her heart medication. But she has a long road ahead of her still. Marik lives with hearing loss in both ears (and now has two hearing aids), is considered legally blind (although her vision has improved dramatically since heart surgery), is not verbal as of yet because no air can pass the vocal cords, and requires multiple therapies to aid in her development. This month, she'll have a CT scan to prepare for choanal atresia surgery to open her nasal passages. Every day is a challenge, and at the same time, Marik is an amazing blessing to everyone she meets. Her smile is contagious, her silent laughter can fill a room, and her sweet spirit seems to radiate miles away.
Marik's friend, Kitty Inman, is "Running for Marik" in the St. Luke’s Lehigh Valley Half Marathon this coming April and hopes you will support by giving a gift to help cover unpaid medical bills from Marik's first months of life. The goal is to raise at least $4,000 dollars!
Every gift is a step towards the finish line! Thank you for your continued support!
