A wish comes true for ill West Chicago-area boy
Owen Payton likes to play as rough-and-tumble as any other 5-year-old boy.
Watching him, it's hard to tell he's is a survivor of three heart surgeries — the first at 6 days old — who now is being treated for a rare and potentially dangerous complication.
"He's been through a lot, and there might be a lot more to come," said Christina Payton, Owen's mother.
Some signs of Owen's illness are beginning to show up in his play. A cough interspersed with laughter. His slightly careful tendencies to ride playground slides with a small measure of fear and to take it slow on the swings.
Like most parents of seriously ill children, the Paytons, who live in an unincorporated area near West Chicago, take things day by day.
And at least for now, Owen's days are filled with climbing, jumping, sliding and swinging on his new backyard play set from Rainbow Play Systems in Naperville — a dream come true for Owen, granted by the Make-A-Wish Foundation.
"I got my new playground," Owen said with a smile Saturday as he ran toward the slide, swings, ladder and climbing wall newly installed in the corner of his family's yard.
His doctor, pediatric cardiologist Sulekha Kumar of Children's Memorial Hospital at Central DuPage Hospital, submitted his name for a wish. The family has known since spring — when Owen chose the play set over other common wishes like a VIP trip to Disney World — that his wish would be granted.
But the real countdown began about two weeks ago, when Rainbow Play Systems set a time with the family to install Owen's wish.
"We made a chart to count down the days, and as it got closer and closer, he got more and more excited," said Owen's father, Christopher Payton.
The play set was installed Saturday to Owen's specifications. He wanted a "tunnel" or tube slide, his favorite because he can't see the sky, his mother said. He also asked for two swings — one for himself and one for his sister, Juliet, age 3.
"He's so sweet," his mother says.
And when the wait finally was over, Owen got to play right away.
"He didn't know what to say," his father said. "His mouth just hit the floor."
Cousins and grandparents joined for a celebration Saturday afternoon featuring Owen's favorite food — pizza.
Christina Payton was 20 weeks pregnant when Owen was diagnosed with a condition called complex single ventricle heart. The two main valves in his heart — the aorta and the pulmonary artery — both come out of the right ventricle. He also has a hole in his heart and mild cerebral palsy.
Owen had open-heart surgery when he was 6 days old and again at 8 months, leading up to a complex procedure called the Fontan operation in December 2009.
The three surgeries rerouted his blood flow, giving him more oxygenated blood — and more energy. "He can run like any normal 5-year-old should," Christina Payton said.
But eight months after his last surgery, Owen was diagnosed with a rare complication called protein-losing enteropathy, or PLE. His body loses the protein molecules in his blood through his intestinal system.
As doctors explained it to the family, "his body is reacting to the new plumbing and not liking it," Christina Payton said.
Right now, steroids are keeping Owen's protein levels up, but he could eventually need a heart transplant.
"It's thrown us for a loop," Christina Payton said.
Christina, 31, is the advertising coordinator for student publications at the College of DuPage, while Christopher, 32, left a job in finance to become a special-education teacher at Batavia High School. They are expecting their third child.
Christina Payton wants to raise awareness about congenital heart defects and the ongoing problems many of these young survivors face.
She leads a chapter of Mended Little Hearts — a national organization to provide support and education for families of children born with heart defects — that meets every other month at Central DuPage. Children are welcome at the meetings, which provide bonding opportunities for families who understand what it's like to have a child with a heart defect.
"I've met a lot of wonderful families that 'get it,'" Christina Payton said. "It's a nice way to give support to other families and the kids get to meet other kids with heart defects and share their journeys."
As Owen gets older, he is starting to question why he has to have his blood drawn so often or go to so many doctor's appointments.
But all that was forgotten Saturday as he played on his new slide, trying to learn the perfect technique to slide down quickly, but without hitting his head.
"We just take it day by day," Christina Payton said.
• Daily Herald staff writer Marie Wilson contributed to this report
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