By Susie Hillard Bullock
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 that 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 four, 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 that 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.”
BUSY DOESN’T BEGIN TO DESCRIBE IT
A full-time student majoring in social work at Eastern Kentucky University, Mary arranges her class schedule to be available to take Gage to medical appointments in Lexington and Cincinnati. Dustin works a vending route full-time and takes college classes online at night. He expects to complete a degree in business administration in December.
“We never had time from minute one to think about anything like the Make-A-Wish Foundation,” said Mary, who learned about the organization’s mission of “granting the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength, and joy.” “It’s not just Gage, but all three children deserve this trip, and we need it.” The family as a whole needs it.”
Their expense-paid trip to Walt Disney World in Orlando in March was the family’s first vacation since before Gage’s birth. “We didn’t want Gage to miss therapy or doctor appointments,” Mary explained. “Plus, it’s not been feasible financially.”
SPRING BREAK AT DISNEY: NO WORRIES, JUST HAPPY
Gage has been crazy about Minnie Mouse for as long as anyone can remember, so no one was surprised when he told Make-A-Wish volunteers Chuck Bryant of Louisville and Ryan Smith of Lexington that his wish was to go to Disney World. The next day, Mary created a 42-day countdown calendar on poster board.
“First thing in the morning, Gage comes into the living room before school and before anything and moves Minnie over a spot,” Dustin said on the evening before the family’s early morning journey to central Florida. “And here we are, the day before we leave. We get to wake up tomorrow and put her on the castle, so it’s going to be exciting.”
Although Make-A-Wish staff in Louisville mapped out the itinerary with painstaking attention to every detail, no one in the Phillips family was prepared for all that awaited. From the minivan rental and special passes for rides to a 30-minute private audience and Checkers game with Minnie Mouse, the experience exceeded the family’s expectations.
“That was the best thing ever for him,” Mary said of the 30-minute visit with Minnie at Disney’s Wish Lounge. “He kept telling her how much he loved her. He was in awe of her. It’s something he will remember forever.”
Running a close second for both Gage and Cruz was the log-flume ride Splash Mountain. “This was shocking, because Gage hates water, but as soon as we got off, we had to get back in line for it,” Mary said.
Brett’s faves: Thunder Mountain” and the Harry Potter Islands of Adventure at Universal Studios.
For Dustin and Mary, the trip offered the chance to be a “normal” family and to watch their children have the time of their lives. “The whole thing was just wonderful for us. Between work and school and doctor appointments, we run so much. You feel like you’re missing out on things, because you have to keep going. It was really nice to be able to spend time with the kids, away from reality.”
The family stayed at Give Kids the World Village, a 70-acre, non-profit “storybook” resort where children with life-threatening illnesses are treated to weeklong, cost-free vacations.
“I didn’t realize how much they did for the kids. They go out of their way to make it a truly memorable and enjoyable experience,” Mary said. “They take care of everything.”
VOLUNTEERS: LIAISON BETWEEN WISH FAMILIES AND FOUNDATION
Make-A-Wish volunteers Ryan Smith of Lexington and Chuck Bryant of Louisville made a big impression on Gage with the giant Minnie Mouse they brought along for their first visit with the Phillips family in December. Ryan, 31, a University of Kentucky student, and Chuck, 47, vice president of sales and marketing for Haier, also brought gifts for Brett and Cruz.
Gage made a big impression on Ryan a couple of months later when he stopped by the Phillips’ home to drop off a gift and check on everyone. “I will never forget Gage running out the door and hugging my leg when he saw me pull up,” Ryan said. “To be able to bring a child and their family comfort, strength, closeness, and hope through something as great as making the child’s dream come true is an incredible feeling.” Ryan said.
Chuck and Ryan took the family to CiCi’s Pizza for lunch and video games the day Gage was the guest of honor at Marion County High School’s eighth annual “Junior Mister Pageant.”
Twenty-two boys competed for the title before an audience of 600 to raise money for Make-A-Wish. They, along with an additional 40 students and 15 adults, begin work in January to pull the 3-4 hour production together. “Obviously the entire show is pure comedy,” said Jamie Brown, who collaborated with fellow teacher Laurie Followell to sponsor the event.
“My cheeks were hurting I was laughing so hard,” Dustin said. “It was so much fun. It was refreshing and humbling to see high school students do something like that for someone they’d never met.”
Since the Lebanon school adopted Make-A-Wish 10 years ago, students and townspeople have raised $81,000 to help grant wishes. Two or three other schools have started Junior Mister Pageants of their own.
Susie Hillard Bullock is director of annual giving at the Beaumont Centre Family YMCA in Lexington and a freelance writer for the Lexington Herald-Leader. A Jackson County native, she graduated from Laurel County High School in 1977 and from Berea College in 1981. Hillary Bullock, who works for Make-A-Wish Ohio Kentucky Indiana is her daughter.