Young Boy Suffers from Rare Skull Disease

Posted at: 07/05/2013 8:45 PM
By: Jenna Lohse

(ABC 6 NEWS) -- A local four year old is battling a rare disease that has him looking at another surgery. This will be his third surgery involving his skull, all before he's old enough to go to kindergarten.

"Just a typical outgoing four year old, too smart for his own good," said Jennifer Newell, mother of Layne Harris.

Like any four year old boy, Layne Harris spends his days on tire swings and balancing with no training wheels.

"Loves to ride his bike, four wheeler," said Newell.

While he looks like a happy, healthy kid, Layne has dealt with serious complications since birth.

"As he started to grow, we noticed his head wasn't growing with him," said Newell.

At two days old, Layne was diagnosed with Craniosynostosis, a rare disease where his skull doesn't grow along with the brain. The only option was to undergo surgery at four months old, and when that didn't fix the problem, another surgery just two years later.

"They removed his skull in seven different places, rearranged it and put it all back," said Newell.

His mother Jennifer says, one in 2,000 kids are born with this disease, and in many cases, one surgery is enough. But for Layne, the complications continue.

"The headaches started, the behavioral issues started, so then I started pursuing more answers," said Newell.

Jennifer found a doctor in Texas who works with kids who have non-typical Craniosynostosis. By the end of the summer, Layne will have undergone his third skull surgery.

"It's pretty scary knowing that they are going to operate on his head again, so close to the brain, you never know what could happen," said Newell.

Without this surgery Layne's skull could continue to put pressure on his brain which may lead to permanent brain damage. Jennifer doesn't want to take that risk, and hopes this is will be the last surgery her little boy will have to go through.

"Just for him to start growing and lead a normal life," said Newell.

Jennifer says only about 60 percent of Layne's medical bills will be covered by insurance. So family and friends have planned a bowling and bean bag benefit for Layne on July 27th at Strikers Corner in Stewartville.