'Steven's Wish'

Boy, 4, survives rare syndrome, will join family on trip to Disney World

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Steven Tucker stops for a moment in front of his television Thursday to watch cartoons in his bedroom. The four year old was born with a chromosome disorder called DiGeorge syndrome which is a rare, congenital disease is similar to Down syndrome and affects an infant's immune system.

COEUR d'ALENE - When the car rolls to a stop in front of his home, Steven Tucker rushes to meet his visitors.

The 4-year-old tugs at the car door, stares at the passenger with his big, blue eyes, and holds out his hand, as if to say, "C'mon, let me help you. Hurry."

Inside the Coeur d'Alene duplex, the red-headed boy, joined by 2-year-old brother Michael, bounces about, grabbing toys, stopping to watch a cartoon, then tugging at the back door so he can play outside in the fenced yard.

"He loves running around, playing with cars, watching Barney," said Steven Tucker Jr., of his son. "He likes to do everything. He's just a normal kid."

Except that he wasn't expected to live much beyond a few months old.

Except that he had heart surgery when he was just three days old.

Except he spent four months at Sacred Heart Medical Center in Spokane.

Except that he was on a ventilator for the first two years of his life, only recently had a trach tube removed from his throat and continues breathing treatments twice a day and as needed.

Steven Tucker, all 3 feet and 35 pounds of him, doesn't like to slow down. But some days, most days, he must.

The toddler suffers from a chromosome disorder called DiGeorge syndrome.

The rare congenital disease affects an infant's immune system and is similar to Down syndrome. Steven's complications include congenital heart problems. The bottom right side of his diaphragm is paralyzed. He was born without an aortic arch and had heart surgery when he was three days old.

"Some of the issues that come with DiGeorge's, like learning disability, thank God we haven't seen that," his father said. "It looks like maybe he won't have that, but we won't really know."

Life with Steven, his father said, has been like "a roller-coaster you can't get off."

"You just kind of take the good and the bad," he said. "We were given a gift, we've learned a lot. It's been a lot of stress, but it's been a lot more rewards than anything else."

A reward is on the way.

The local Wishing Star Foundation is sending Steven and his family to Disney World in Florida in late August.

GTOS (Go to our Salon) in Hayden is heading up a fundraiser, with a goal of $5,000. A "Steven's Wish" benefit is scheduled 9 a.m. to 5 p.m. on Aug. 11. There will be a barbecue, music, cakes, prizes, and mini-services such as haircuts, styles, bling, facial waxing and manicures. Massage vouchers will be available. Steven will drop in from 3-5 p.m.

All proceeds will go toward Steven's trip.

His mom, Holly, said her son is more than ready for the rides at Disney World. She's thrilled he'll get a chance to do nothing but have fun.

"Steven is my life. He's wonderful," she said. "He's our ray of sunshine."

When they go out, Steven, named after his dad, says hello to pretty much everyone. One of his favorite places is the mall.

"He knows more people than we know," she said, laughing.

Steven and Holly were married seven years before they had their first son. When told the infant had a disorder that would affect his life, their reaction was "denial."

"You hear about it, but you never really realize it until it happens to you," Steven said.

They were told before the birth the baby had a chromosome disorder that would leave him with medical challenges. They never considered not having him.

"You take it and move forward," he said. "We never gave up."

Still, little Steven almost didn't survive.

When he was two months old, doctors doubted he could make it and talked to his parents about taking him off the ventilator.

Steven and Holly said no.

"We just made the decision whether we had three days or 10 years with him, we were going home," Steven said.

Another doctor performed a tracheotomy, which created an opening in the trachea and helped Steven breathe. It worked.

"We saw a turnaround, improvement from there," his dad said.

The trach tube was recently removed, but Steven still faces daily medical challenges. He visits doctors about every four months, but "gets sick pretty often," his dad said.

Because his right lung is scarred, lung infections are not uncommon - and will present a threat to Steven for the rest of his life.

"A normal cold for me and you will make us sick and we're tired," he said. "With him it can be life threatening because it goes into his lungs."

"It's not so much if he'll get sick, it's when he'll get sick," he added.

There is help at home.

Caregiver Dusty Boggs started with the family on Thursday, and will keep close watch on Steve four days a week, about four hours each day.

"I think my job is going to be nice here," said Boggs, who also donated $20 to the fund for Steven's Wishing Star Foundation trip.

Steven, who works at Olive Garden, said they've been fortunate to receive medical assistance for his son, and they have health insurance.

Steve III has show improvement in the past months, especially at interacting with other children, since he began receiving help at Fernan Elementary School.

"His social skills have undergone a complete turnaround," his dad said. "Before it was kind of like him to be isolated. Now, he gets to enjoy people."

He's starting to talk more, too. Steven usually communicates through the sign language his parents taught him. These days, he let his folks and visitors know what he wants through words and yes, simply grabbing hands and leading folks where he wants them to go.

"He's very smart. He's very open to everyone," his dad said.

Their son, Steven and Holly said, likes to "love on people."

"Once they meet him, they fall in love with him," he said. "It's pretty hard not to."

Besides the rides and attractions and cartoon characters that await at Disney World, there's another reason the family is ready for their cross-country flight.

"This will be our first trip where it doesn't involve hospitals," Holly said, smiling.

Always wanting to be outside, Steven Tucker attempts to unlock the door that leads to the backyard of his home so he can play. Tucker was born without an aortic arch, which required surgery when he was three days old, and the bottom right side of his diaphragm is paralyzed.

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