Mackenzie Holcomb, 11, a sixth-grader at Rootstown Middle School, will serve as this year’s “National Face of Hydrocephalus Awareness” for the Pediatric Hydrocephalus Foundation.

In the months ahead, she will be featured in advertising campaigns and promotional materials leading to National Hydrocephalus Awareness Month in September.

Mackenzie is representing the girls, while 2-year-old Jaden Brown of Colorado will represent the boys.

How does it feel to represent thousands of girls in the United States?

“It feels … good?” said the shy girl recently at her home in Rootstown.

Hydrocephalus, which means “water on the brain,” can be present at birth or can develop later as a result of infections, injury, trauma, or tumors of the central nervous system. In infants, the disorders can cause the “soft spot” of the skull to bulge and make the head larger than normal. Without treatment, many people with the disorder will die, but those who survive more than a year can have a normal life span.

Mackenzie’s mom, Amy Gyure said neither she nor Mackenzie’s dad, Gary Holcomb, noticed anything unusual about their daughter until July of 2008, when the girl’s hands started shaking. A local doctor diagnosed her with “intentional tremors” and referred her to Akron Children’s Hospital Medical Center. There, she was diagnosed with hydrocephalus as well as two benign tumors known as gliomas.

One of those, the one on the brain stem, was causing the fluid buildup. The other, which sits on the optical nerve, may have something to do with Mackenzie’s mild vision problems that require her to wear glasses.

The disorder has caused no developmental delays for Mackenzie, and her head has not swollen the way an infant’s head would. She has regular MRI’s to check on the tumors, and the hope is that the testing can become less frequent as she grows. She also gets yearly eye checkups.

She’s had six surgeries in the nearly four years since her diagnosis, most of them related to the shunt in her brain that drains the excessive fluid. The scars from those surgeries are covered by her shoulder-length black hair, and she has no symptoms most of the time. That is the biggest problem, her mom said.

“The hardest part is that she doesn’t show any symptoms,” Gyure said. “Before, I could count the number of times she’d been sick. Now she’s got a handful of doctors and surgeries left and right.”

Though she has no restrictions on her activities, her parents still have to watch for signs of a problem with the shunt, such as headaches and nausea. Her parents worry that an errant ball in gym class or a fall at school can lead to problems with the shunt. But it doesn’t keep her from playing sports, although Mackenzie is more of a spectator than a player.

But it has landed her in the hospital a few times. It’s an experience she sleeps right through, though she wakes up confused and, her dad says, always ready to eat.

In the months ahead, the foundation will collect photos of Mackenzie and interview her for various promotional pieces, all aimed at getting the attention of the federal government. The shunt was invented in the 1960s, decades before Mackenzie was born.

“They’re trying to get funding for research,” Gyure said. “The research is so outdated.”

Gyure said many parents of kids with hydrocephalus were given a grim prognosis, but now say they are blessed with happy children with a good quality of life.

“There’s not a lot of awareness,” she said.

Hydrocephalus is an incurable condition in which excessive spinal fluid gathers in the brain, placing potentially damaging pressure on tissues.

Jaden, who will be 2 on April 26, was the subject of a story in The Durango Herald on March 13, 2011, about his mother’s effort to form a support group for people with hydrocephalus. Jaden has a shunt in his head to drain spinal fluid.

Jaden will be the boy featured in promotions for National Hydrocephalus Awareness Month in September. Mackenzie Holcomb, an 11-year-old girl from Ohio, will be the featured girl.

“We’re happy to be part of this recognition,” Christina Brown said Friday. “It’s so cool.”

Jaden’s designation as the face of hydrocephalus carried a $500 stipend, which the family is going to donate to Children’s Hospital in Denver for research, Brown said.

Hydrocephalus occurs about once every 500 births.

The Pediatric Hydrocephalus Foundation is an all-volunteer nonprofit that works to raise awareness about the malady, promotes research and serves as an advocate for the hydrocephalus community.

As Dante Sciulli ran through the family’s backyard toward the swing set, his mother, Jenna, encouraged her son’s independence and marveled at the 4-year-old’s exuberance.

A few months ago, she probably would have been a bit more protective – and nervous.

But after undergoing his third brain surgery in October to relieve symptoms from hydrocephalus, the Chartiers Township youngster is doing very well, and his strength, stamina and muscle tone continuing to improve, thanks to twice-weekly physical therapy sessions at the Children’s Therapy Center in Peters Township and Washington.

He not only is an inspiration to his mom and dad, David, and his siblings, Luca, 10, and Elena, 8, but also the millions who are living with the condition.

It’s also why Jenna now serves as the volunteer director of the Pennsylvania Chapter of Pediatric Hydrocephalus Foundation Inc., one of 21 state chapters throughout the United States.

When Dante was diagnosed with hydrocephalus, there were no local support groups where Jenna and her husband could obtain educational and emotional support. For a while, they participated in a support group in Cleveland.

“Dante is doing so well and I have the time,” Jenna said. “After talking with other parents, I took the role because I felt like I could. I wanted to be there for other parents.”

And the foundation is starting to pick up momentum, she said.

Jenna became the volunteer director last summer. Since then, the state PHF chapter has held several fundraisers and awareness events, and has donated money to Children’s Hospital of UPMC Department of Neurosurgery, National Research Foundation and family outreach. It also has partnered with Project Linus to provide blankets in goodie bags for patients at Children’s Hospital in Pittsburgh and Ruby Memorial Hospital in Morgantown, W.Va.

Hydrocephalus is a buildup of cerebrospinal fluid inside the skull that leads to brain swelling. The fluid surrounds the brain and spinal cord, and helps cushion the brain. CSF normally moves through the brain and the spinal cord, and is soaked into the bloodstream. CSF levels in the brain can rise if:

n Its flow is blocked;

n It does not get absorbed into the blood properly;

n The brain produces too much of it.

Too much CSF puts pressure on the brain, pushing it against the skull and damaging brain tissue. One in 500 newborns is diagnosed with hydrocephalus each year in the United States, and, according to Jenna, it’s the No. 1 reason for pediatric brain surgery in the country.

There are two forms of hydrocephalus: congenital and acquired.

Congenital hydrocephalus begins in the womb. It is common in babies who have a birth defect in which the spinal column does not close properly.

“A lot of times, it’s secondary to something else,” said Jenna, noting that those with congenital hydrocephalus often incur more setbacks and have more physical and mental disabilities.

Dante has acquired hydrocephalus.

When Dante was born in June 2007, he spiked a fever and spent several days in the neonatal intensive care unit. Even though nobody suspected hydrocephalus, when Dante was discharged from the hospital, the Sciullis were told to keep an eye on him.

It wasn’t until Dante’s head began to bulge in a matter of days that the couple realized something was wrong. He was 3 months old.

Dante had a CAT scan and MRI, which revealed a brain cyst. Jenna said the cyst probably developed before he was born.

Since learning about the condition, Jenna said in hindsight, Dante probably was experiencing symptoms for at least a month. For instance, Dante did nothing but fuss when the family was driving through the mountains during their vacation to the beach as the pressure on his brain increased with the change in altitude.

“But a medical problem wasn’t expected,” she said.

In infants with hydrocephalus, early symptoms also may include eyes that appear to gaze downward, irritability, seizures, sleepiness and vomiting.

Following his diagnosis, Dante had surgery to excise the cyst. A few weeks after that, a shunt was implanted to relieve the pressure in his brain.

At the time, the family lived in Wexford, where Dante’s pediatrician immediately prescribed physical therapy. “Dante had to learn to hold up his head again,” Jenna said.

He has taken physical therapy twice a week ever since to improve his muscle tone and increase his strength.

In October, Dante underwent his third surgery, this time to replace the shunt. The surgery involved three small incisions so doctors could thread the tubing from the shunt at the top of his head to behind his ear, through the chest cavity and into his stomach.

Jenna said the tubing uncoils, and it is long enough that Dante could grow to 6 feet tall and it won’t present a problem.

Dante’s shunt also is magnetically programmable, so if adjustments need to be made, they can be done electronically at the hospital. As a result, he must avoid contact with extremely strong magnetic fields, and he is unable to participate in contact sports.

In August, the Sciulli family will attend National Hydrocephalus Awareness Day on Capitol Hill, where they will meet with U.S. congressmen. Dante also may get to meet a few friends with hydrocephalus who he has met online.

“It will be good, too, for the other kids to see siblings of children with hydrocephalus,” Jenna said.

For more information, become friends with Pennsylvania Pediatric Hydrocephalus Foundation Inc., on Facebook, or visit www.hydrocephaluskids.org.

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Pediatric Hydrocephalus Foundation Inc., Pennsylvania Chapter, is holding a fundraiser through April at Beechie’s Place, 400 W. Pike St., Meadow Lands. Hydrocephalus ribbons can be purchased, and a percentage of all kids’ meals will benefit the state PHF chapter.

CHARLOTTE, N.C. — A routine ultrasound turned frightening for a local mom as she learned her baby would be born with a life-threatening condition.

Lindsey Musgrave remembers the day when she learned her son Vincent would soon have a sister.

“We were elated,” Lindsey said. “My husband wanted a girl. I wanted a girl. I just wanted a healthy child, though.”

That same ultrasound revealed something else.

“The doctor looked at me and he looked very concerned,” Lindsey recalled. “He said there was something wrong with her brain. It didn’t hit me at first. I was thinking it can’t be that serious right? And then he said, ‘No it’s really serious.’”

Her baby’s condition was so serious that the doctor told her to consider aborting the pregnancy.

“I asked them if she would ever be able to walk or talk, or ever be able to form relationships and the answer to those questions was, ‘I don’t know.’”

Lindsey also asked if the baby would be able to lead a normal life.

“They flat out told me no,” Lindsey said.

Marley was born with a severe case of hydrocephalus, which is excess fluid that puts dangerous pressure on the brain.