6-year-old doesn’t let medical condition stop him

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CAPE GIRARDEAU, Mo. (AP) - Brimming with cheeky swagger, Izaac Pursley sits atop the little red scooter trike he’s dubbed Porcupine.

“Race you to Mom,” he dares in his husky little-boy voice and zips toward his mother, big sister Evee-Kay jogging gamely beside him.

“I win!” he declares, scooting past his parents, Sheree and Dr. Greg Pursley of Jackson. Sheree shakes her head as Izaac sticks out his tongue, cranks out a textbook three-point turn, and motors off toward the jungle gym, shouting, “It’s easy for me!”

“He’s such a hambone,” Sheree says with a smile.

It’s a cool Thursday afternoon and the Pursleys look to be having as much fun as any of the other families wandering around Capaha Park in Cape Girardeau, but none of the other families’ children is on life support.

Six-year-old Izaac was born with a form of dwarfism, and resulting complications have stunted his growth and damaged his lungs. He needed a tracheotomy before he was a year old and uses a ventilator to pump oxygen into his too-small chest when he sleeps at night, The Southeast Missourian reported (http://bit.ly/1ki6h0G ).

The Pursleys keep a big blue suitcase in the back of the family minivan complete with oxygen tank, ventilator, carbon dioxide monitor, medications and gauze. Greg carries a suction unit in a bag slung over his shoulder in case mucous plugs off Izaac’s trachea tube.

“The only emergency equipment we don’t carry with us wherever we go is a defibrillator,” explains Sheree.

Yet somehow, as Izaac scrambles headfirst up a yellow tube slide and Evee-Kay dangles by her knees from the monkey bars, the Pursleys demonstrate how they have learned to manage Izaac’s precarious medical condition without losing their ability to enjoy typical family activities.

“We’re like ducks,” Sheree says. “On the surface, we have fun. But at the same time, underwater we’re kicking like crazy. We as parents realized that we had to take on the extra burden and worry so that (our children) could focus on living as normally as possible.”

Izaac was born May 12, 2008. Sheree says the pregnancy was uneventful. The ultrasound at 25 weeks showed a normally proportioned baby boy. The scheduled C-section delivery went smoothly.

“If anything, the pregnancy was easier than it was with Evee-Kay,” she says.

So she and Greg were understandably surprised when the doctor came in and told them Izaac most likely had achondroplasia, a form of dwarfism. His upper limbs were a bit shorter than average, and he had an extra finger on each hand and an extra toe on each foot.

Greg and Sheree were shocked. Neither of them carried a genetic predisposition, but it turned out Izaac’s condition is caused by a mutation that can happen late in the third trimester, the chances of which are one in 50,000.

The couple didn’t know what would be in store for a child with dwarfism, or what was in store for them as the child’s parents. But looking down into the bassinet at the way Izaac’s skin bunched up around his short upper arms, they tried to stay optimistic. He looked like a narrow-chested bodybuilder. They nicknamed him “Michelin Man.”

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