Two years ago Brooklyn Jade Balzano was dancing with ease, entertaining dreams of becoming a professional ballerina.
It was later, when Brooklyn was finishing kindergarten, that her parents, Pete and Sandy began to notice differences between her and other children.
Brooklyn’s gait was just slightly off balance and she was still having trouble learning to write.
Her dad, Pete Balzano, said when they first noticed something was wrong, it was basic things she had trouble with. Things that she normally could do, like opening a milk carton or the outside door.
Her parents took her to a pediatrician with their concerns. The pediatrician made X-rays of her hips and knees but they turned up nothing.
The doctor then sent her to an orthopedic specialist who diagnosed her with cerebral palsy, but the pediatrician did not agree. He said she did not meet the criteria for cerebral palsy and he recommended therapy.
Her walking ability progressively became more difficult.
Then in November of last year, Brooklyn fell very ill, and was admitted into Children’s Hospital in Knoxville.
She had uncontrollable movements and stroke like systems. She was in the hospital for four days and after many tests she was diagnosed with sydenham’s chorea, a disease that stems from a bout of rheumatic fever.
But even with medical attention, Little Brooklyn’s walking wasn’t improving and her hand coordination was also suffering.
She was sent to Shriner’s Hospital for Children in Lexington, Ky. There, her parents were told the problem with their daughter was neurological not skeletal. Finally, at Vanderbilt Children’s Hospital in Nashville a cardiologist confirmed it was not sydenham’s chorea.
Finally, the little girl was diagnosed as having Dystonia, a neurological movement disorder. Finally, the family had an answer that fit.
Dystonia is sustained muscle contractions that cause twisting and repetitive movements or abnormal postures. The disorder can be hereditary or caused by other factors such as birth-related or other physical trauma, infection, poisoning (e.g., lead poisoning) or reaction to pharmaceutical drugs, particularly neuroleptics.
Treatment is difficult and is limited to minimizing the symptoms of the disorder, since there is no cure.
“It’s a devastating feeling as a parent to have a child go through this. I used to take her to dance and beauty pageants and it’s heartbreaking to know she can’t physically participate in that right now,” her mother Sandy Balzano said. “The other day we were in the car and she asked why she couldn’t do ballet anymore. All I could say was ‘Baby, you can do anything you want,’ and she just replied with ‘Thank you mom, you’re the best.’”
Brooklyn, who is now 7, hasn’t been responsive to any medication yet. Sandy said there are more than 23 genetic tests for Dystonia.
Brooklyn has been through two with no results.
“The disease contorts her movements making writing difficult because of holding a pen,” Sandy said. “To see her walking, someone might think her hip is dislocated.”
Sandy said she had to begin buying stretch and drawstring pants because Brooklyn has trouble with buttons because of her hand coordination. She also struggles tying her shoes.
Through it all, her parents say Brooklyn has remained the same little warm spirited girl she’s always been.
“She’s such a strong little girl. She knows something’s wrong and there’s tasks she can’t do, but she doesn’t let it stop her. She has never even mumbled the words ‘I can’t.’” Sandy said.
The Balzanos will soon go see a doctor in Birmingham who specializes in movement in children.
Because their insurance will not cover the trip across state lines a benefit car show will be held on Saturday, Oct. 5 in the Big Lots parking lot on the east side of Morristown.
Registration for the car show will be from 9 to noon for $25. Any kind of vehicle can enter.
The show will also feature activities for kids, live music, a 50/50 raffle and homemade goods.
Donations can be made at any Region’s Bank location under the account name “Hope for Brooklyn.”
Because of a recent tonsillectomy, Brooklyn had to be sent to Children’s Hospital in Knoxville. Her condition was aggravated by dehydration. To learn more about Dystonia, visit www.helpbeatdystonia.net. To follow Brooklyn’s journey visit www.facebook.com/prayersforbrookejade.
-By Chris Phipps, Tribune Staff Writer