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June 11, 2013

Make-A-Wish makes dreams come true

Volunteers needed to expand outreach in Kentucky

LAUREL COUNTY, Ky. — Dustin and Mary Phillips of Stanford can hardly remember life before son Gage’s birth almost five years ago.  

“We had no idea during the pregnancy that anything was amiss,” said Dustin. “The heart defect that Gage has is virtually undetectable on ultrasound, but it was obvious as soon as he was born that something was wrong because of the swelling.”

Before Dustin and Mary had time to process what was happening, they found themselves at University of Kentucky Children’s Hospital, standing vigil over their newborn son and straining to comprehend as doctors explained Gage had aortic coarctation — a narrowing of the aorta, the main blood vessel carrying oxygen-rich blood from the left ventricle of the heart to all of the organs of the body — and multiple ventricular septal defects, or holes in the heart.

“Gage underwent open-heart surgery at three days old.  He had balloon angioplasty at six weeks, another surgery at three months, and another open-heart surgery at nine months,” Dustin recalled. “He was nine months old before we could pick him up normally.”

“Normal” for the young couple and sons, Gage and Brett, then 4, became a series of doctor and therapy appointments, tests and hospitalizations. Brett spent a lot of time with family and friends but seemed to take the seismic shift in family dynamics in stride.  

With most of the attention suddenly focused on his fragile brother, Brett learned a lot more about life than he should have at his age. “Brett still remembers mommy and daddy being at the hospital so much,” Mary said. “It took a toll on all of us.”

 “To this day, he is quiet and serious,” Dustin added.

Five months later, Dustin and Mary found out their third child was on the way.  “That’s when this section of hair hit the floor,” Dustin joked, pointing to the front of his slick, smooth head.

“All I could think about was 'what will we do?'” Mary said. They found out soon enough with the arrival of Cruz, an active, gregarious boy who lacks only a few pounds being the same size as Gage.

“Cruz is an absolute godsend, and he thinks Gage hung the moon,” Dustin said. “There couldn’t be a better little brother than Cruz or a better big brother than Brett.”

On Easter weekend 2011, Dustin and Mary got another shock when Gage began having seizures.  That’s when they learned about another serious condition Gage had had since birth.  

“To put it simply, his brain never fully developed while he was in my womb,” Mary explained.  He’s missing a large section of the right side of the brain.”  As a result, Gage has developmental delays in speech, language and motor skills that will become more noticeable as he gets older. He also has stroke damage, cortical visual impairment and strabismis (crossed eye) in the left eye, which will be corrected with surgery soon. Doctors are still trying to determine how much vision Gage actually has.

Even though his muscles are not as strong as those in other children his age, Gage functions unusually well, considering the limitations birth defects have placed on him. Dustin and Mary attribute this to the “brother effect.”

“Gage tries to do everything they do,” Mary said.  “When we went to the neurologist for the first time, he told us when he looked at Gage’s MRI, he was not expecting to find the boy he found when he walked into the examination room.  He didn’t expect him to function as well as he does.”

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