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Saturday, July 24, 2010

Community steps up to help Knowlton girl with rare spinal condition

Published: Saturday, July 24, 2010, 9:56 AM

Story Written By Jane Primerano
KNOWLTON TWP. — While most 11-year-old girls like to show off their spelling skills, Cathleen Balla has a talent for impressive words.
Unfortunately, that’s because they describe a serious disease that is impacting her life.
“That’s Cathleen with a C,” the bouncy blonde said before spelling the ailment: syringomyelia, or SM, a tubular cyst in the central spinal canal. Going along with SM is a Chiari malformation, a structural defect in the cerebellum, the part of the brain that controls balance.

Cathleen has suffered back pain, headaches, pressure behind her eyes and fatigue for three years. Her doctor, Eugene Cullen of Skylands Medical in Blairstown, suspected SM, but Children’s Hospital in Philadelphia found nothing wrong, her mother, Sara, said. The Shriner’s Hospital in Philadelphia confirmed SM.
Nothing can correct any damage that’s been done, but surgery may stop the progression of the disease, which can include glaucoma and bowel and bladder problems. In the U.S., multiple surgeries are performed and insurance won’t pay for any surgery at the stage Cathleen is now.
The Ballas discovered an institute in Barcelona where laser surgery is performed at an early stage. The American surgery is invasive, with more chance of infection. However, insurance won’t pay for surgery in Spain either.
In spite of this, the Ballas have scheduled the operation for Oct. 7. This means Cathleen has to fly to Spain on Oct. 6.
Cathleen has received some help from the Chiari Institute in Great Neck, NY., but a group of friends is raising funds for the surgery and ancillary expenses. The surgery will cost about $22,000, unless the dollar continues to fall against the euro.
She and her mother, Sara, have their plane fare taken care of, but Cathleen really would like her sister, Gabriella, 16, and her father, George, to come along. She would like her brother, George, 19, to come as well, but understands he can’t miss the time away from school. He is a mechanical engineering major at Rutgers.
The Ballas will also need a place to stay in Barcelona for a few days. Cathleen can’t fly home immediately after surgery because of the pressure of the plane. And, she admits, she’d like to see a little of the city while she’s there.
Family friend Clara Uhlmer has taken on Cathleen’s situation as a mission.
Taking over Knowlton Township Clerk Lisa Patton’s office one day last week, Uhlmer outlined her plans for getting Cathleen to Spain.
“We figure someone must have frequent flyer miles to donate to Gabriella to fly,” she noted. “Maybe someone even has a time-share in Barcelona they could loan the family.”
While seeking these donations, she has arranged fund raisers to help.
Next Saturday, Cathypaloosa will grace Tunnel Fields, bringing back a tradition of battles of the bands at this Route 94 venue. Cathypaloosa runs from 2 to 8 p.m. and features a dunk tank and other events as well as the bands, which include Gentleman’s Club. Knowlton Township Mayor Frank VanHorn promises the Warren County Dairy Princess and other surprises. VanHorn is known for his surprises. He also promised Cathleen a ride on his motorcycle, possibly with the Knowlton Beaver. All of this is for a $5 donation.
Another fund raiser is a Sept. 12 pig roast and bike rally, starting at Tramontin Motorcycles in Hope and ending at the Lion’s Club pavilion in Delaware Village for a pig roast. Tickets are $20 for the motorcycle driver, which include a t-shirt, and $10 for passengers. Tickets for the pig roast alone are $10 for adults, $5 for children 12 and under and free for children 3 and under. Patton is fielding calls for the roast at 908-459-4816 ext. 11. Patton said all members of the Lion’s Club and the township committee members are selling tickets.
A clothing drive is running through 3 p.m. on August 18 at 28 Hainesburg River Road in Columbia. All clothing except winter coats or sweaters and all shoes (but no skates or winter boots) will be accepted as will handbags and belts, soft luggage and backpacks and small toys and stuffed animals.
Cathy’s Cans is a soda can drive at the same location. Tony and Kathy DeMarky of Island Dragway have agreed to donate all cans from the Great Meadows drag strip to the cause.
For information on these drives, call Sara at 908-362-3001 or Annette at 908-496-9252.
Sara Balla wouldn’t ask, but friends have said she could use a car. The family has one vehicle which George needs to commute to work and Sara must take Cathleen to physical therapy, massage therapy and doctors appointments (although she maxed out on her insurance for PT).
Uhlmer said her informal group is trying to put together a tricky tray. They are receiving donations, but need a sponsoring group with a raffle license.
Meanwhile, Cathleen is spending her summer with friends and hanging out like any normal kid, until she gets too tired. “Sitting is tough,” she admitted, noting she hopes she can move around during the 8-hour airplane ride. She is looking forward to riding on the mayor’s motorcycle, too. A little nervous about the trip, she is confident she will be better after the surgery.
Her mother said Dr. Miguel B. Royo Salvador, who founded the Institut Neurologic de Barcelona, has performed 200 of these laser surgeries and 199 had the outcome he predicted. Cathleen believes she will be the 200th success.

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