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Family will drive cross country after boy’s heart nearly stops 3 times on plane

Posted at 7:33 PM, May 13, 2016
and last updated 2016-05-14 13:49:38-04

DINWIDDIE COUNTY, Va. -- A Dinwiddie County family is getting ready to drive to California so their 11-year-old son can have a life-changing operation.

Walker Day looks like any other fifth grader at Dinwiddie Elementary School, but he suffers from a rare disorder.

"When things are good, he does look so normal," Amy Day, his mother, said. "And that's what makes it so scary, because at any moment he can just turn blue and pass out."

Walker was born Jan., 14, 2005, with Congenital Central Hyperventilation Syndrome. There are less than 2,000 documented cases of this condition in the world.

When he was just three weeks old, Walker had a tracheotomy and has to sleep with a ventilator at night.

"So you have to have some way for these kids to breathe, " Day explained. "That's what keeps them alive. Normally it's a trach and a ventilator that they go on. Most of the kids are night-time dependent only."

During the school day, Walker has a nurse watching over him with oxygen, a ventilator and a suction pump in case of an emergency.

"His nurse makes sure he is OK," his mother said. "She looks at him, makes sure his color does not change.  If she needs to she'll put him on his ventilator or just say, 'Hey, Walker, take some breaths.'"

Walker Day

Walker Day

Walker is now changing classes for the first time as a fifth grader and loves learning.

"I like science and reading and Virginia Studies" he said.

The Walker family is adamant their son is treated like everyone else at school. While he has a trach, no one seems to notice, including Walker.

"On a normal day, I just think, 'Hey, it's not even there,'" he said.

The boy, who has already had eight surgeries, knows his next operation will be for the best.

But the family will not be flying to California. That is because the last time they flew, Walker's heart rate dropped drastically three times while the plane was at 30,000 feet.

As a result, Walker, his parents and two brothers will set off for a cross-country trip Memorial Day weekend.

Once the surgery is complete, Walker should be able to come off his nightly use of the ventilator. And if all goes well, the trachea tube will be removed by the end of the year.

When that heals, Walker will be able to swim and spend the night with his grandparents for the first time.

The Walkers thanked the community for their support and said an online fund created to offset the cost of the trip and medical bills has been a huge help.

Click here if you would like to make a donation to help fund the family's trip. More than 83 people had raised more than $8,000 as of May 13 at 7:30 p.m.