Girl born with cleft palate faces challenges with heart
August 11, 2007
By ART PETERSON apeterson@Scn1.com
Chicago News Sun-Times
Getting painted onto a canvas by a noted Los Angeles artist was exciting for 12-year-old Natalie Nadelhoffer of Gurnee, but it wasn't the first time she rubbed elbows with a celeb.
She got a front-row seat for a Cher concert two years ago, along with a backstage pass. Between sets, "Cher gave me a hug," said Natalie.
Natalie Nadelhofer was featured in a paint-splashing fund-raiser held in Las Vegas for the Cleft Palate Advocate Organization "Healing Art" program.
(Zorana Nikolich/Special to the News-Sun)
About face
Approximately one in 600 babies are born with a cleft lip and-or cleft palate, making it the most common birth defect.
With medical care and family support, the condition need not be permanent, and babies born with the conditions usually live mostly normal lives. Volunteer groups of parents, led by Debbie Oliver, have formed a nationwide support network, with links to a huge variety of help, from medical experts to how-to's for getting insurance coverage.
"We're not experts, but we know people who are," said Oliver. Her daughter Erin, now 20, was born with two clefts. Parents are faced with "guilt, shame, blame and fear for their child's future." But cleft palate is no one's fault, and there is help and guidance, she said.
Oliver's original "cleftAdvocate" group has become part of AboutFace USA, which encompasses all facial medical issues, also providing assistance for burn and accident victims. The groups continue to be all-volunteer, including Oliver.
For information, check the websites:
http://pathfinders.cleftadvocate.org
Helping out
A fund-raiser for the cleft advocate organization will be hosted the first week in October by Easy Gourmet Meals of Gurnee. The business will donate all proceeds from both customer-prepared entrees and from "personal chef" curbside service.
To reserve time or place orders, participants must call before that week (847-244-2620) or sign up on-line ( www.easygourmetmeals.com ). The business is located at 401 N. Riverside Drive.
Born with a cleft lip and palate, Natalie is growing into a cute, bright, well-spoken young lady. And a cheerleader for a Warren Township football team.
She, and eight other youngsters from across the U.S., met artist Metin Bereketli at the recent North American Craniofacial Family Conference in Las Vegas. They got to paint each other, and painted by him onto a vertical canvas. "Healing Art" is a passion for Bereketli ( www.metinbereketli.com ), who regularly helps charitable organizations.
"He painted my nose blue," said Natalie, who sported many other colors when the wild splash was complete. She and her mother Diane are long-time participants with AboutFace USA, particularly its program cleftAdvocate.
A big part of what the organizations do is help parents and kids overcome the challenges, including many medical procedures and problems with insurance companies. When Natalie was "Star of the Week" at her school, she educated her fellow students about cleft palate issues and, even more important, lessons of life. She showed them her birth photo, for comparison to her current appearance. And she urged acceptance of others, for the kinds of humans they are, aside from what they look like.
"If people make fun of you, it's OK, because it really doesn't matter," she said.
Her mother Diane had been "shocked and not prepared" when Natalie was born; older ultrasounds could not detect the condition. "Information given me was so outdated." It took searching to find the special kind of bottle that a "cleft baby" needs for feeding; the bottle has a special nipple and one-way valve.
Several weeks later, in the waiting room at the Craniofacial Center at the University of Illinois--Chicago, she met other parents and their support group was born. The Internet has proven invaluable, she added. Natalie will need additional nose and lip revisions in the next few years.
"I want people to know that there is help and support out there," said Diane, who is a data specialist with Screening Reports of Bensenville.
Her husband Greg, a beverage distributor, said he's proud of Natalie. "Any children or parents who meet her say her strong personality overcomes facial defects. She's gotten tough over the years, overcoming the challenges, and also because all her cousins are boys. It's been difficult at times, 11 surgeries in 11 years, but we've gotten through it."
In doctors' offices, Natalie reassures young mothers of newborn "cleft babies," Greg said, "They realize that their babies may not look so good right now, but they'll grow into normal children."
Natalie hadn't done painting before the conference in Las Vegas, but now says, with a laugh, "I think I could do painting parties with other people."
PHOTO GALLERY
http://www.suburbanchicagonews.com/newssun/home/506403,gallery-cleft11.photogallery
Natalie Nadelhoffer
Getting painted onto a canvas by a noted Los Angeles artist was exciting for 12-year-old Natalie Nadelhoffer of Gurnee. Born with a cleft lip and palate, Natalie is growing into a cute, bright, well-spoken young lady. And a cheerleader for a Warren Township football team. She, and eight other youngsters from across the U.S., met artist Metin Bereketli at the recent North American Craniofacial Family Conference in Las Vegas. They got to paint each other, and get painted by him onto a vertical canvas.
Natalie Nadelhoffer, 12, of Gurnee, swings in her front yard in Gurnee. Natalie is wearing the clothes from the Las Vegas fundraiser called " Healing Art" program. She and several other kids where painted onto a canvas. (Marina Samovsky/News-Sun)
Natalie Nadelhoffer, 12, Gurnee, was featured in the paint-splashing fund-raiser in Las Vegas for the Cleft Palate Advocate Organization "Healing Art" program.
(Zorana Nikolich/Special to the News-Sun)
Natalie Nadelhoffer
Getting painted onto a canvas by a noted Los Angeles artist was exciting for 12-year-old Natalie Nadelhoffer of Gurnee. Born with a cleft lip and palate, Natalie is growing into a cute, bright, well-spoken young lady. And a cheerleader for a Warren Township football team. She, and eight other youngsters from across the U.S., met artist Metin Bereketli at the recent North American Craniofacial Family Conference in Las Vegas. They got to paint each other, and get painted by him onto a vertical canvas.
Natalie Nadelhoffer, 12, Gurnee, (middle) was featured in the paint-splashing fund-raiser in Las Vegas for the Cleft Palate Advocate Organization "Healing Art" program. (Zorana Nikolich/Special to the News-Sun)
Natalie Nadelhoffer, 12, Gurnee, was one of eight youngsters from across the country who participated in the paint-splashing fund-raiser in Las Vegas for the Cleft Palate Advocate Organization "Healing Art" program led by artist Metin Bereketli. (Zorana Nikolich/Special to the News-Sun)
Renowned artist Metin Bereketli is shown here with Natalie Nadelhoffer, 12, Gurnee, who was featured in the paint-splashing fund-raiser in Las Vegas for the Cleft Palate Advocate Organization "Healing Art" program. (Zorana Nikolich/Special to the News-Sun)
CHICAGO NEWS SUN-TIMES
http://www.suburbanchicagonews.com/newssun/news/506266,5_1_WA11_MAINNAT_S1.article
