Summerlin-area boy, 8, faces latest surgery for rare defect
Doctors told Peter and Jennifer Ron-Monroy that their son, Rock, has been in pain every day since he was born eight years ago. He has a rare defect called craniosynostosis and Saethre-Chotzen syndrome.
The Keith and Karen Hayes Elementary third-grader was facing another surgery in late February at Rady Children’s Hospital in San Diego. It will require a 10-day stay.
The Summerlin-area family is trying to raise money. This will be Rock’s fourth surgery.
“We had to declare bankruptcy after the first one,” said his mother, Jennifer.
Peter recalled the jubilation he felt at the birth of his only child.
“Then, the next day, the doctors tell us he’s got craniosynostosis. We’re thinking to ourselves, ‘They’re wrong. How can they see that there’s something wrong with him?’” he said.
But then he studied Rock’s head shape. Two of the skull’s plates were fused.
Rock had his first surgery at 7 months old. A couple of years later, another surgery further separated the skull plates.
“Now he’s got plenty of room in there and there’s no pressure on the brain,” his father said. “We thought we were out of the woods. Now they tell us there’s something going on with this whole numbing thing he’s experiencing.”
The numbing is a new symptom and mostly affects Rock’s hands and feet. Doctors were stumped. This winter, more tests were run. The result: Rock was further diagnosed with Chiari malformation. It required extensive surgery at Christmas time. The surgery didn’t work; his brain stem is still under too much pressure, and the hope is that this latest surgery will give it more room.
“The doctor said it’s like letting out the waist band in your pants,” Jennifer said. “Your first reaction is to ask, ‘Why?’ But we have a very strong faith in God and we (want him) to be a typical, healthy kid.”
The last surgery lasted seven hours. The next one is expected to take about four.
With so much pressure on his brain, Rock was not verbal for much of his younger years. He uses his own version of communication and since the last surgery has made significant progress.
“I’m a cow and a pig,” he said as his parents talked about his surgeries.
That means “I don’t like that,” his parents explained. Then, they asked him if he was a pig.
“But I don’t have a woo-woo-woo-woo,” Rock answered, sounding like a police siren.
That meant a squiggly tail.
Then there are words that no one needs translated.
“I’m in pain right now,” he said later, tensing up on the couch and wincing.
His father hurried to hug him.
Rock is on pain medication, but it’s not enough to get him through the day, his parents said. Too much and he gets woozy, they added.
“It’s so hard to watch him and try to help him get through it,” Peter said.
The Go Fund Me fundraising goal for the new surgery is $8,000. More than $7,300 had been raised as of late February.
Patti Hodder, a family friend who spends time on both U.S. coasts, set up the Go Fund Me effort. She said that when Hurricane Sandy affected her and others on the East Coast, Peter and Jennifer sent provisions such as batteries, so this was her way of paying them back.
“I met Rock when he was, like, 6 months old, and so I’ve known of his challenges,” Hodder said.
Peter is the lead singer for two rock bands — Monroy and Spandex Nation — and appears weekly at Fremont Street Experience. About a year ago, the family started a YouTube channel to provide a peek into the lives of a rock-band family.
“You see this band and you think it’s all parties and good times, but they’re a real family with real struggles,” Hodder said.
Jennifer said she has an ulterior motive behind the YouTube videos.
“What Rock has is very rare,” she said, “but I wanted the parents out there facing this to know that there are other parents who are dealing with this and maybe even though insurance doesn’t recognize it, it exists, and here is living proof.”
To reach Summerlin Area View reporter Jan Hogan, email jhogan@viewnews.com or call 702-387-2949.